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Lillie

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  1. I'm so sorry to hear about your mama. I'm from La. also New Orleans. I now live in Alabama on the gulf in the home of Forrest Gump Bayou La Batre. I lost my dear little mama last month. I know exactly how you feel. My mama made it 19 months. A good 19 months too. Just the last few weeks she went down and down fast. Her chemo worked, shrunk the cancer, we got even a short remission. Mama's chemo always made her feel better. I can often remember her saying between chemo breaks I'm ready for my chemo. As a family we decided to LIVE with mama while she was alive. We had a big family meeting the day of diagnosis. I remember it so well. Daddy told us kids right now mama is alive. We will not cry or grieve, we will live life with her celebrate live with her as a fanily, and when she is gone then we will grieve as a family. Oh the memories we made during that 19 months. My mama was the baby of her family and the only one left alive she only had one brother. He had 12 children. I threw a big reunion with all mama's brothers children their grands and great grands there was 154 of us! We cooked up a storm gumbo, shrimp and spaghetti, crawfish etc. I had a friend that does kerokee(I can't spell so please forgive me) He came with his equipment, we sung, I had a photographer, gosh what fun. I remember passing the mike around for each of my cousins and brothers and sister to tell stories about mama. One of the girls sung the sung daddys hands and we all ended up in tears thinking of papa and Uncle Sonny. All us girls in the family did a cruise to nowhere with mama. We got a limousine one night and took mama out, we built us a bondfire of memories to get us through the emotional winters we now face. Hang tuff, make memories, and know we are all here and understand how you feel. Hugs Lillie
  2. My mama got only one mouth sore toward the end, we aren't sure if it was chemo related or not. Her doctor gave her a swish and swallow liquid which you can ask about. I know this must be ever so painful for you. The mouth and digestive tract are composed of cells (mucosa) that are more sensitive to chemotherapy. During or after chemotherapy or radiation therapy, a cancer patient may have some sort of mouth problem, ranging from dryness to ulcers. These mouth problems may be related to the cancer itself, but more are often due to chemotherapy or other medication. Three to ten days following chemotherapy, patients may experience a burning sensation, followed by ulcers. When ulceration develops, treatment is mostly supportive until the cells regenerate themselves, which takes about 7 to 14 days. This can impact on oral comfort and nutrition, but adequate care can minimize these effects. Prevention: Basic mouth hygiene is of primary importance, and should be initiated before chemotherapy starts. Patients should brush their teeth 3 to 4 times a day with a soft toothbrush or sponge and use floss. Patients at high risk (those receiving 5-FU or methotrexate) should rinse their mouth frequently with salt water, baking soda or chlorhexidine following chemotherapy. Treatment: Once mouth sores developed, analgesics and anesthetics can be employed. Xylocaine is a local anesthetic available as a gel or spray used to decrease pain, but has a short duration of action. It should not be used prior to meals, as it can cause choking. Protective agents (sucralfate, kaopectate) are also used to cover ulcers and decrease irritation. It is important not to use irritant substances like peroxide as they way worsen the ulcers. Topical steroids should not be used as they may facilitate infections. In addition, patients should not eat spicy, hot, acidic or coarse foods or juice. Preference should be put on soft moist foods. Drug name Usual dose Side Effects Saline mouthwash 10-30 mL swish and swallow every 2 to 6 hours Few Baking soda mouthwash 1/2 tsp. salt plus 1/2 tsp. baking soda in a cup of warm water, rinse every 3 or 4 hours Few Chlorhexidine (Peridex) Rinse every 4 hours Taste, color, teeth staining Betadine mouthwash Diluted with water 50-50 10 cc 3 times a day and as needed applied locally or swish Iodine allergy, color, teeth staining Xylocaine GEL: 5 to 15 mL every 4 hours SPRAY: 1 spray every 4 hours Possible systemic effect Choking if taken before meals Sucralfate or kaopectate 10 to 30 mL every 2 to 6 hours, swish and spit Taste Damage to the mucosa can facilitate some infections, such as candida or herpes simplex virus infections. Appropriate treatment should be started. Thrush can be treated with topical antifungals, such as clotrimazole or nystatin. When infection is more severe, oral ketoconazole, fluconazole, or intravenous amphotericin may be used. Drug Name Usual dose Side effects Clotrimazole troches (Mycelex) Place troche in mouth 4 to 5 times a day, for 7 to 14 days Well tolerated, taste Nystatin suspension 1 teaspoonful every 4 to 6 hours, swish and swallow Well tolerated, irritation Fluconazole (Diflucan) 100mg every day Nausea, vomiting, itching Amphotericin B Intravenous dose varies Headache, fever, chills. Amphotericin B mouthwash 10mg swish and swallow every day Taste Dry mouth (xerostomia) can occur in certain patients and can be easily treated with drinking fluids, sodas, sucking ice chips, eating fresh fruits or chewing gum. Preparation containing alcohol or glycerin should not be used because they may irritate or aggravate dryness. Artificial saliva (MoiStir, Artisial) is commercially available and can be useful in some patients. Dryness should not be overlooked, as it may predispose to ulcers and infections. Hugs Lillie
  3. Lillie

    book

    I have several suggestions Beyond Miracles by Stephen P. Hersh M. D. - Written by a psychiatrist specializing in the treatment of cancer, this book helps bring back a sense of control with its up-to-date information, insights into the changing health care system, and specific advice. It includes information on how to manage stress and pain, how to communicate with your doctor, what to eat, and approaches to alternative treatments. The book also deals with such life issues as sexuality, living with uncertainty, and spirituality in a time of profound crisis. Living well with cancer by Katen Moore, Libby Schmais. Offers cancer patients and their caregivers the information and options they need to cope with and manage the side effects of cancer and its treatment. My favorite When Life becomes Precious by Elise Needell Babcock. Provides step-by-step information for the caregivers of cancer patients, offering advice on being appropriately supportive, handling special occasions, explaining cancer to children, making worthwhile gestures, and balancing care for oneself. These can be checked out at your local library, purchased at amazon.com or Books a Million. Hugs Lillie
  4. My mama is gone now. She died pecefully on Tuesday morning about 6:30 AM with both me and my sister holding one of her hands. We gave her the last bath after she had passed. The following is copy and paste from e-mails. Yesterday afternoon mama's blood pressure began to drop. I told my sister mama was probably going to pass on to heaven. We stayed with her last night. It is the first time that two of us stayed. We had the nurse to come in and take the blood pressure ever hour and a half and wake us if we were asleep to tell us what the blood pressure, temp, and respiration's were. About 10 last night mama raised a fever of 101.8 and the nurse wanted to do a suppository for the fever. We said NO. Around 5 this morning the respiration's became about 16 seconds apart. I got up and sat on the side of my bed and watched mama breath. I got up and fixed me some coffee and pulled a chair by mama's bed and sat by her and held her hand. At 6:15 the alarm went off on the oxy machine. We had already moved the thing from toe to toe finger to finger as each one turned cold and would no longer register. This was the last hand to switch it to, I pulled it off her finger, turned off the machine and just sat there holding her hand. Mama took one breath and it was 45 seconds before the next breath. I shook Yap and said get up! She raised up and said is it time? I said Yes. She sat on mama's left side holding her hand, I was on the right. Mama took two very short breaths and that was it. Yap said do you have a pulse. I felt and said no. Yap placed her head over mama's heart, listened, and cried out I love you mama. We sat there for a few minutes. Me just holding her hand. I finally got up and went out the room got the nurse and said MY MAMA IS DEAD. The nurse came and listened. She brought in the blood pressure machine. Yap said do you have to do that. The nurse said yes, and we must do an EKG also. We sat there and they did their work. Then they paged the doctor. He came in and listened to her heart. Hugged us and told us what a strong fighter mama was. The nurse began to fill a pan to bathe mama. I said are you going to give mama a bath? She said yes. I said I will bathe her, I've bathed her every day she has been here. She gave me my first bath I will give her her last. Yap helped me, the nurse cried. When we finished the nurse said that is the sweetest thing I've ever seen in my entire career. Yap and I waited for the funeral home to come get mama. We helped get mama out the room and out of the hospital into the hearse. I went and made final arrangements. We had mama's wake tonight. Our family did not want to wait till Thanksgiving to bury mama. We do not want to remember that holiday as the day we buried our mama. The funeral is tomorrow. We will receive guest at the church at 9:30 A.M. with the service to begin at 10. I think I have told you all before that daddy asked me what I would put in the obit. I said that she was the wife of, mother of, grandmother of....because that was what she was most proud of. I went on to say that I felt no need to brag on her accomplishments because those that knew her knew her accomplishments. Today at the funeral home I did the obit with just who us kids were and grand were. Just like I had planned. The obit hit the paper in Mobile. The Press called and now wants a picture and they are doing an article on my mama. This is not in the obit. It is an article on who she was and what she did. They even called the Mayor (he is my cousin) My brother Joey had to go after the wake tonight to bring a picture to the man doing the article. All we could find was a picture of daddy and mama together. Daddy didn't want himself in the picture. He said it was about mama. I told daddy we couldn't find one of just mama, and after all mama wouldn't be what she was without him. I'll see if I can find the article on the net for you all and post the address for you. This isn't something we expected at all but are quite proud. It will be in the Mobile Press Register tomorrow morning if anybody finds it on the net please post it for me as I'm not too computer literate. To make matters worse. My brothers wife, (Tuttie girl as you all know her) mama passed away this morning also unexpectedly. Now my two nieces has lost both their grandmothers in one day. I went and bought Hannah and Hope each a teddy bear and Tuttie girl and plant. Tuttie girl has a brother they are trying to find. Her wake is planned for Friday and the funeral for Saturday to hopefully give them time to locate this one brother. Poor Tuttie when I finally got to her today she asked me How much does God think her family can stand? You must remember her husband, my brother, is the preacher. Joey will do mama's funeral tomorrow. Please pray for him that God will give him the strength he needs. I know he will do this right. He told me nobody can do mama's eulogy or funeral like I can. She deserves this from me. I'm ok to those that are wondering. I've watched my mama suffer and fight. I knew it was time for her to go home. I praise God that my mama is in a better place. She was a Christian, my family is believers, and it was just time for her to go HOME. That doesn't mean I may not have a bad time in the coming days. I know what to expect. I may need to lean on you all some days to just say this day sucked, but I hope that I've done most of my grieving already. Goodnight my friends and God bless you all with his peace and comfort tonight. Hugs Lilliepaste I still feel such relief. I truthfully don't think I'll grieve over mama like I did my FIL. I know that sounds so strange, I did love mama the best, but I had 19 months to prepare for this and over 20 days of watching her suffer with every breath. This time seems so different. I don't know maybe it will hit me later. My brother did such a fantastic job. He is a preacher and did mama's funeral. The Eulogy was nice, I must get a copy from him and send you a copy. We had a program booklet, and my SIL who also lost her mama write this.... Tuttie's Reflection As I reflect back, there are many things about my mother-in-law that I wondered if many knew, like how she loved to sew and enjoyed making clothes for the grandchildren, as soon as the news was out that a new baby was coming she hastily went to work on baby bibs and blankets and such. I wondered if many knew how wonderful she was to us all, her visits to our homes in the afternoon were something we all looked forward to...the time we spent with her was priceless, even the trips to chemo with her were special, whoever went was sure to be treated to lunch at Cracker Barrel or Olive Garden, her two favorite places. She was special in many ways. She was smart and witty, she loved the Lord and loved her Sunday School class, she adored her family and was proud of each and every one of them, she was a devoted mother and wife, a hard worker as well as a homemaker, she was a fabulous cook, and she was happy to teach me Joey's favorites. The event that stands out most in my mind is meeting her for the first time; I was very nervous and wondered what she would think of me....she was wonderful! I was surprised to learn that she encouraged Joey to marry me! She accepted me the very first day she met me. Life will be hard without her in our lives but her memory will live on in each one of our hearts for she has taught each of us so much that we will go on to teach our children. Eleanor, you were the Best I love you always, Tuttie Shannon wrote a poem for the back of the program Think of me with laughter and a smile. We'll be together again in just a little while. Please Don't cry or shed a tear. You may not see me but I'll always be near. Remember the happiness and all the fun we shared. I always knew just how much you cared. Daddy, Mama, and my brother Sonny too Were at Heaven's gate when I went through. God called them home years ago And oh how I've missed them so! The four of us are together once more and one day we'll meet you on Heaven's Golden Shore. The service was lovely. Very few tears were shed, mostly we sat there stoic. I remember smiling as I looked at the celebration of life pictures and remember how and when each was taken. We had time to say our good-bye, but I'm not so sure about daddy. He came by early and had a cup of hot tea with Sheila while the rest of us drank coffee. I offered to take him with us to Cracker Barrel with us but he said no he had plenty of left overs from yesterday. I did go and cleaned out all mama's drawers. I had all the grand children here late yesterday picking out perfume, make up, hats, purses, and trinkets. What was left over I put in the good will box today. I still must get the clothes out of her closet and I think I'll be finished. My sister and I laid out mama's good jewelry on the couch last night. I picked up mama's pearls and handed them to Yap and said you take these I have one, and mama had a diamond cross neckless and I have one of those also so I said you take this too. So now with what's left here lets pick out what we want. She said since you have been so good you pick first. My heart was pounding the entire time because there was only one thing I wanted. I grabbed the wedding band. Just a cheap little band but so priceless to me. I then took all the other jewelry and pushed it to her and said you have it all I got what I wanted. Mama had some good stuff too! My sister picked up the engagement ring placed it in my hand and said you have this too! It is a 5 karat diamond! No joke! It's not that big around(even though it is big!) its very deep. Yap turned out good also, she got a solid gold rolex with a diamond bezel, two diamond tennis braclets, A very big heart diamond about 2-3 Karats with bagets on the side 2 huge diamond rings with bunches of diamonds, diamond earings, gold neckless, but all I really wanted was that wedding band. I'm so glad I got it! Wasn't yap nice to hand me the engagement ring too. I've got a goood sister. I sit and watch people now with their happy lives and think you just have no clue what tomorrow may bring, today you smile tomorrow you cry. Life has its ups and downs. We choose to wallow in our self pity or we choose to live. I choose to live. So now I mover forward into life. Hugs Lillie
  5. Well guys I've had mama at the hospital now for two weeks! She is a tough old bird. She started actively dying Wednesday. She still is hanging on, she gets about 6-8 breaths an hour, still making pee, her heart rate has been running from 111-120 until today now it is 88-100, her blood pressure is still normal. She is getting 50 units of IV fluid just enough to keep her port open. On 100% oxygen. Getting breathing treatments of morphine, albuiteral and atrivent(SP on both) at least every 4 hours and can get them once an hour at our discreation. She really has major pain when she tries to cough. We let her cough some but our hearts won't let us make her continue as we do give her 10 of morphine. Right now she can get 10 once an hour. She gets it when she needs it not once an hour. She will occasionally suck a dab of water from a sponge. She stopped sucking from a straw on Wed. I stand over her with one of those glycrin swabs now soaked in water to put some moisture in her mouth. Yesterday I did manage to get 3 bites of chocolate ice cream in her two different times but today nothing but one suck off the sponge of ice water. I know I could sedate her into a death with all the morphine but OH GOD I can't do that unless there is real pain. Mamas doctor shook his head today and said she should have been gone weeks ago and he can give us no idea as to how long this can actually go on. I don't want to sound selfish, but I want my mama to go home now to be with God. I'm so tired of seeing her fight. Why won't she give up the ghost? We have all given her permission to go. She never wanted to die and I guess she still doesn't. How do we keep on going? I've lived at the hospital now for two weeks. I stand on my feet giving her drops of water, bathing her, cleaning her poop, putting in suppositories to make her poop, she was always such a private LADY and now has no dignity. I can't count the number of times I've pulled her gown down or the cover up to keep her from exposing her private parts(she would never do that in her right mind) My daddy no longer can come to the hospital. He sits and cries. He says he can not watch her die. They married when she was 14 and he 19 they have been married for 54 years. I am the oldest child at 53 my sister the youngest at 33. I have two brothers inbetween us girls. Mama's care has mostly been mine because my sister has small children. My brothers help but there is really only so much they can do being boys and respect mama. Has anybody else ever been thru this? How much longer do we have? When will it end? God I hope this message doesn't sound bad. I love my mama with all my heart, she is my best friend. I want to keep her forever but not like this. Hugs Lillie
  6. I put mama back in the hospital Sat. morning a week ago because she can't breath. Her oxy level was 74 with oxygen. Now she is on 100% oxygen and is receiving morphine in her breathing treatments. Her oxy stats are ok with the 100% oxygen, her heart rate is going at about 120 beats a minute, now her blood pressure is beginning to decline. Her doctor says maybe 2-3 days? Mama is 19 months past diagnosis, she had a good 18 months fighting this terrible disease. We had lots of mini celebrations, made memories, and now I encourage each of you to never give up the fight. Hugs Lillie
  7. I don't post often I mostly read. My mama has had a rough few weeks now. I went by the hospital on Monday to pick up mama's reports on her scans.....More bad news I didn't tell mama I figure let her sleep well that night. Basically it said the lung cancer has progressed significally since the last exam, she has copd, more fluid on the lung, For the liver it says innmuerable varying size masses throughout the liver consistent with extensive metastatic disease. Several enlarged lymph nodes in the celiac/ periPancreatic area. The above findings represent a significant detrimental change. I took mama to the dr. ionWed. morning and she l found On our way to the oncologist mama told me that she looked for him to really give her a good report because she felt good. My heart sank to my feet but I couldn't tell her. As Dr. Meshed came into the room he asked her as he always does how she felt, she said good, how are my reports. He said not worth a darn. Everything is much worse, there is more cancer in the lung and more in the liver. As he said this he was walking toward mama and bent down to kiss her and said but you look good 'Do you want to mess around' I popped him on the head and said HEY that's my mama you don't talk like that in front of me (In a joking manner) He always cuts up with mama. When she was in the hospital with the chest tube in and they had put the stuff in the tube to help the lung and lining seal back and mama had to roll around in bed he said 'I think I'll climb in bed with you and we can roll around together.' He always makes her laugh. Any way he said he looked over all the chemo's that she has done and there is a pill form of chemo that he would like to try called Vepesid. She will begin the pills next Wed. Take two pills one day one pill the next day for 2 weeks, take a week off and then see him. He then told her how she had beaten every odd, she is a strong lady, and he hopes to keep her feeling good for a while longer yet. So we have a new plan, all we have to do now is hope and pray this one works. Finding the new chemo pill has proven to be quite a task for me today. It seems that these pills are so very expensive that most pharmacys want a gurantee that you will purchase X amount because they don't want them sitting on the shelf until they lose their shelf life and since mama's prescription is for only 21 pills I've phone everywhere (not exactly everywhere but a lot of drug stores) I finally located one that will get me the pills they are ordered and the insurance company is paying for them all except a $20 co pay. I guess that is what I get for living in a small rural area. Mama got up in trouble yesterday morning. She couldn't breath. I phoned 911 and she was transported VIA ambulance to the hospital. She was full of fluid again. She was drained VIA chest tube about 2 weeks ago. The pulmonary dr. drained her with needle. I showed him mama's CT scans and he said he would not put her thru any procedure that would not give her comfort. At this point he says her comfort comes first, and he said by all means for her to start the new chemo pill. He said as long as mama does not get sick from the chemo to do the chemo. So far mama has never been sick from her chemo. I got her back home yesterday afternoon. Mama sent my sister to get her prescription for her inflamation pills filled. My sister came back and put the new prescription in the old bottle(yap yap our name for my sister because she talks so much. said mama told her to put them in the old bottle) Last night daddy called because they can't find the nausea pills and says Yap has messed up mama's medicine. When I got there I found that mama was out of the nausea medication that she has been taking. Mama then said Yap was suppose to have had them filled today. I told mama no you sent her for the inflamation. So I got the bottle for nausea and the prescription has expired. I told mama I'd call the dr. tomorrow and get a new prescription. In the mean while I had phenegran pills there so I got those out for her and then she said she didn't need them. I asked her why did she have daddy look for the nausea meds. she said she didn't know. Then I found out she had taken her morphine. It always makes her loopy. So then I told daddy its just the morphine 'mama's high' WOW never thought I'd be telling daddy mama's high LOL. Sometimes when she has a morphine she talks about some crazy stuff. At least she is mostly normal talking just occasionally a little high I think things are setting in finally with daddy. Yap told daddy if things continue like this mama won't be with us long. Daddy said oh no she will be here for a while. Yap asked me to talk with him. So yesterday at the hospital he asked me which opened the door for us to talk. I told daddy I had the scans and what they said. He wanted to know why she had fluid again so soon. I then explained that the lymph nodes were all full of cancer now and that lymph nodes carry off fluid and mama's can no longer do their job. I think he understood. He asked me what we could do to stop this from happening. I said nothing daddy our time is running short. He then asked me how long did I think mama had. I told him if this new chemo works we could have more time, if it doesn't we will probably be lucky if she is here for Christmas. He then said we need to see if there is anything else mama wants to do.. He asked me to go plan mama's funeral. I told him I could handle it. He said where did I want to take her. I told daddy mama had mentioned to me the other day that as soon as she felt better she wanted me to take her to Radneys(funeral home in Mobile) to do her funeral. I told him I had told her I would, but that I haven't mentioned it to her again because I thought if she wanted to she would tell me. He then asked me if I thought Radneys best. I said no, I think it would be better for us to have it at Serenity's in our area. It would be more convent for us. He agreed. Then he asked me what church? I told daddy I didn't want to transport her to a church I thought it would be easier for us all to do the chapel at the funeral home. He agreed. He then asked me what did I want to put in the obit for the paper. I said daddy I can't see bragging about all mama's accomplishments, anybody that knows us knows her accomplishment, I just want to put she was your wife, our mother, and the grands grandmother. He agreed. He asked about flowers. I said I never thought about flowers daddy how do you feel. He said no flowers. They just leave a mess for somebody to clean behind to make donations to cancer fund, or some other worthy cause that suited us kids. Daddy went on to say mama didn't have much insurance probably not enough to bury her with just to let him know what was needed. I told him I would handle it all not to worry. He then said mama wanted me to have her car. Mama has a new cadiallic. I told daddy I didn't need nor want mama's car just to leave it in the garage and he could use it. He says no he doesn't need it either. So I just said we will leave it put till one of the kids needs a car. Daddy told me when mama passes he thinks he will shut down the net shop, get in his truck and just head west to see the country for a while and I said do what makes you happy daddy. So you see I think he knows now. This is one of the hardest things I've ever been thru in my life. Here I am posting and I don't really have a question other than has anybody did the pill Vepesid? Stupid for me to write such a life story just to ask about one pill but it helps to get it off my chest and if you read all this thank you for caring. Hugs Lillie
  8. Kate, my mama was diagnoised May 02 and still with us. She had mets to the liver. She is no longer doing as well as I'd like. I fear this chemo is no longer working. She just finished her chemo this past Friday and gets new scans next week. My mama has done carboplatin and Etoposide, then cpt-11 which didn't work at all, then topoteken, when the topoteken stopped working she switched back to etoposide and carboplatin. Now I fear this one is no longer working and we will be looking for another chemo to try. We looked into the radio frequency abalation but mama's lung cancer is in an area that would be too dangerous to abalate. I just returned from Mexico purchasing virulizin. The viriulizin is approved in Mexico for melonoma, it is in clinical trials for Pancreatic cancer now here, there has been some promising results with it on lung cancer. I talked with mama's oncologist about me going to Mexico to get her some virulizin he wrote me the tx and off I went. She hasn't been on it long enough to know any results yet but it did give her something to have some hope in for now. Of course I'm praying for good scans but have myself prepared for less than good. Hang in there its tuff. Hugs Lillie
  9. Thank you all for your replies. They really do help to just know that somebody has suggestions that may help and I will print these out for future reference. To the one that asked about radiation...No mama has not had radiation, she had breast cancer 6 years ago on the right side her sclc is on the right side with mets to the liver she can not be radiated there again:( been there done that and can't revi sit. thank you for the tips on the pain meds. I hate this, I hate my mama is dying and there is NOTHING I can do to buy her more good quality time. I want to scream I want to pitch a hissy fit but what will it do? Hugs And Thanks Lillie
  10. Norme, mama was diagnoised because of her pain. We have found that while she is on her chemo the pain goes away, now the pain is no longer going away she hurts in her lung and liver area. She gets new scans before she sees her oncologist again and we know this time the news won't be good. Her cancer is growing we fear. I would just like to buy her more good quality time. She isn't ready to throw in the towel and of course neither are we. I don't think we will ever be ready. This is just so hard. I hate being a caregiver to my parent, I feel like somewhere our roles reversed. Mama leans on me and so does daddy. Not that I mind doing anything for them and I'm quite happy they are here to do for, but I so wish it was not because they are sick. If things don't get better I fear that I must move in with them. I wouldn't want to move them out of their home or enviroment for my convience. My grown daughter was in a bad accident on April 13, she was hit by a drunk driver. The driver died. Shannon still isn't walking, she is living with me and my husband along with her 12 year old son. She is a divorced school teacher and hasn't been to work since the accident. Between her and my mama they keep me so busy. My husband will take over here at home when I go to live with my parents at the end. Just please remember us in your prayers. We can use the prayers. Hugs Lillie
  11. Thank you Johnathon, First yes those are the chemo's she has done. I don't think the doctor will give her anymore chemo for 3 weeks since she just finished today but I will most certainly ask about the ones you mentioned and I do so much appreciate your reply Hugs Lillie
  12. I don't post much mostly read. My mama has small cell lung cancer with mets to the liver. She is 15 months now on different chemos and so far has had a good quality of life. She is now beginning to go down the hill. Mama started off with carboplatin and etoposide and got a very short lived remission. After that her oncologist put her on CPT-11 and her cancer grew slightly. Then she was switched to Topotecan. Then the Topotecan stopped working. Since she had been off the Etoposide and Carboplatin for 9 months they put her back on that one. In the beginning mama usually had pain a few days before chemo began. Then her pain has started the week after chemo, now she just finished her round of chemo and is still having lots of pain and she knows this time the chemo didn't work. Today she cried for the second time since learning she had cancer and that her time was/is limited. It nearly killed me to see her cry. She is such a strong woman and wouldn't even take the pain killers until I began to insist. Now she needs mored pain meds just to take the edge off the pain. She today with tears said I'm so afraid they are going to have to medicate me into a stuper, I don't want that to happen but I know it will. Now to my question. What other chemo's can they try on her? Has she had them all yet? What are the chances that another chemo will work for a time to give her a quality of life? God this is so hard. Thank you so much for your replys in advance. Hugs Lillie
  13. Is mom a diabetic? I don't know the reason why, but I remember the nurse telling me that because dad (pancreatic cancer) was diabetic he had the tendancy to dehydrate much easier and faster. He constantly had a drink of Iced Tea or water. If mama is NOT diabetic scatch that...does she have diarrhea? vomiting? and how much water is she drinking per day? I've read a cpl of times that when on chemo especiallly, that the pt should be drinking 64oz of water per day whether they are thirsty or not...I don't know if any of this helps just thought I'd throw it out there. Also watch the drinks with caffine they tend to dehydrate a patient One other thought that may help is I think its pedisure that makes a popsycle that mama's give their children when they are sick but you can check on that and don't be afraid to give her some pedisure to drink. Hugs Lillie
  14. Lillie

    Virulizin

    Yes, you are right it is used right now in a trial for PC that is how I found out about the virulizin. I spoke with mama's oncologist this afternoon, he is not against me getting it for her or administering it to her, actually what he said is that it may be more promising than anything he can offer her presently. The bad part of it all is I'd have to go to Mexico to get the virulizin and I don't like that at all. Below is another site for you to read that shows other "POSSIBLE" cancers it may help. I'm going to find out exactly what all I must do to to get the virulizin a lady I know on the pancreatic chat board is leaving Fri. for Mexico to get the virulizin and I hope to speak with her to see what all is involved. I will keep you informed of what I learn. Hugs Lillie Virulizin®, based on a relatively new approach to the treatment of cancer termed immunotherapy, relies on the drugs ability to activate the body’s own immune system to recognize and eliminate cancer cells. Virulizin®‘s product position is good with a strong safety profile, equal or superior efficacy than existing treatments and the potential for use in both single and combination therapy for treatment of a broad range of diseases. Lead cancer indications for Virulizin® include Pancreatic Cancer, Malignant Melanoma, and Kaposi’s Sarcoma (KS). Other possible cancer indications include Lung Cancer, Breast Cancer, Uterine, Ovarian and Cervical Cancer. Additional possible non-cancer indications include immune system disorders such as Endometriosis, as well as viral diseases, such as HIV, Hepatitis B and C, Herpes Simplex Virus, Cytomagalovirus and HPV. Virulizin® may also prove to be an appropriate adjuvant to therapeutic vaccines. The mechanism of action of Virulizin® remains the subject of ongoing research. Results to date have shown that (1) Virulizin® stimulates the release of tumour necrosis factor, TNF-alpha, by tumour cells in vitro. (2) Virulizin® is a powerful stimulating agent of macrophage, the “big eater” cells of the immune system. Consequently, Virulizin® enhanced the ability of macrophage to kill tumour cells in our experimental system. (3) Virulizin® appears to induce apoptosis, or programmed cell death, of tumour cells. Virulizin® has several competitive advantages over existing cancer treatments. Clinical trial results have indicated that Virulizin® performs equally or better than currently available products like Gemzar® or conventional treatments. Furthermore, in clinical studies, the maximum tolerated dose has never been reached. This profile for Virulizin® will compare favourably with chemotherapeutic agents and other Biological Response Modifiers. The low toxicity of Virulizin® may provide patients with a better quality of life. A favourable clinical response has been noted with immunosuppressed patients, such as those with AIDS/KS, versus some other Biological Response Modifiers. A favourable clinical response has also been noted with patients receiving other cytotoxic therapy. This coupled with the low toxicity of the product make it a good choice for combination therapy with existing treatments. The fact that Virulizin® is currently administered as an intramuscular injection will allow for treatment on an outpatient basis. A Phase III clinical trial to evaluate Virulizin for the treatment of advanced pancreatic cancer was initiated in November, 2001. The double-blind, randomized clinical trial will be conducted at approximately 40 North American medical centers with the goal of enrolling 350 patients with advanced (unresectable, recurrent or metastatic) pancreatic cancer. Patients will be randomized to receive either treatment with gemcitabine or treatment with gemcitabine in combination with Virulizin. Those patients who fail or become refractory to gemcitabine will then be treated with 5-Fluorouracil (5-FU) or with 5-FU in combination with Virulizin. Immunotherapy, Macrophages and Virulizin® Immunotherapy Major advances in cancer therapy have been made in the past two decades. One of the most significant advances has been the emergence of immunotherapy, or biological therapy, a clinical approach that stimulates the body's natural defenses against cancer using Biological Response Modifiers (BRM). Clinical data have indicated that solid tumors have antigens that are recognized by cells of the immune system, including a certain type of white blood cell called a macrophage. When macrophages are activated, they are believed to enhance the immune system's rejection of tumors by producing cytokines, or proteins. These cytokines can either kill tumor cells directly or stimulate the anti-tumor activity of other cell types. Activation of macrophages by the drug at the site of the tumor Macrophages Macrophages are located throughout the body and serve as an important line of defense in several ways. One of their most crucial roles is to protect the body against the development of cancer. Scientists still do not fully understand the control of this macrophage-mediated tumor cell destruction, a fact that has slowed the development of successful immunotherapy for many types of cancer. Virulizin® Virulizin® is a potent and unique activator of human macrophages and may have significant potential in the immunotherapy of cancer patients. The drug is purified from bovine bile through a proprietary production process at Lorus's manufacturing facility. Virulizin® has been shown in vitro to directly stimulate certain macrophages to express a tumor-killing function. Virulizin's® function, or cytocidal capacity, has been shown to be as potent as other, more conventional macrophage activators. Additional evidence suggests that Virulizin® has potential as an immunotherapeutic drug in the treatment of many forms of cancer. Even more important is the finding that macrophages taken from cancer patients can be activated by Virulizin® despite the inability of these same macrophages to respond to other conventional activators. In other in vitro studies, Virulizin® has been shown to stimulate the macrophage-mediated destruction of tumors obtained from patients undergoing chemotherapy. In the last eight years, Virulizin® has been evaluated in over 450 patients who received more than 16,000 injections of the drug Virulizin® and has demonstrated an excellent safety profile. Preliminary results suggest that Virulizin® immunotherapy may be associated with prolonged patient survival and an improved quality of life. Moreover, patients with pancreatic cancer and malignant melanoma have survived longer,compared to historical controls, when they have been administered Virulizin®.
  15. Lillie

    Virulizin

    I haven't posted much I mostly just read. My mama has SCLC with mets to the liver. She was diagnoised May of 2002, and she is still doing ok considering. I have a question to ask you all. Has anybody done any research on Virulizin or has anybody did it in a trial? Mama had breast cancer 4 years before her diagnosis with lung cancer and she can't do a lot of the trials. I've learned that the Virulizin can be purchased and given to the patient but I'd have to go out of the country to get the virulizin. I'm going to speak with mama's oncologist tomorrow and I will ask him about it as well but I mostly wanted any input that any of you may have. Thank you now for any replys. Hugs Lillie
  16. Lillie

    Ethyol??

    I was just wondering what part of Alabama you live I'm in Mobile Co. Lillie
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