Caregivers and loved ones also need assistance when it comes to coping with cancer. Our online forum resources at CancerCompass.com are a helpful place to turn to for information and support. http://www.cancercompass.com/message-board/caregivers/1,0,122.htm Sun, 22 Nov 2009 00:00:00 GMT Sun, 22 Nov 2009 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My name is Uncle Tim, Tim Paynter, and I am trying to help a little boy in Mexico with HLH, a rare child hood disease.  The care of choice is through oncology, chemo, bone marrow transplant, my friend, Eduardo Salazar Rivera is poor poor poor. His story is below, clicking the link tells it all. http://saveeduardo.blogspot.com/2009/11/good-man-sad-man-new Eduardo is at eduardoenvivo@gmail.com  that translates to Eduardo in life.  We will translate any message, love and compassion is a universal language. Can you give me some advice? Maybe a story or two?  I have been a caretaker before but it is always a challenge and something new.  Thanks, Uncle Tim, Tim Paynter http://www.cancercompass.com/message-board/message/all,41626,0.htm lawmancolo Wed, 18 Nov 2009 00:00:00 GMT My name is Uncle Tim, Tim Paynter, and I am trying to help a little boy in Mexico with HLH, a rare child hood disease.  The care of choice is through oncology, chemo, bone marrow transplant, my friend, Eduardo Salazar Rivera is poor poor poor. His story is below, clicking the link tells it all. Eduardo is at eduardoenvivo@gmail.com Can you give me some advice? Maybe a story or two?  I have been a caretaker before but it is always a challenge and something new.  Thanks, Uncle Tim, Tim Paynter http://www.cancercompass.com/message-board/message/all,41625,0.htm lawmancolo Wed, 18 Nov 2009 00:00:00 GMT As I sat and held his hand, telling him that I loved him and would see him later, my husband of 30 years left me and started another journey.  When he first told me he wanted to pass at home, I was worried that I would not be able to handle it.  For me and the kids, it turned out to be much better than we had anticipated.  He is no longer in a body that is devistated by cancer and at peace.  In loving memory;  Len Cressman RIP  11/16/2009   http://www.cancercompass.com/message-board/message/all,41610,0.htm Barb1453 Wed, 18 Nov 2009 00:00:00 GMT I lost my Mom Oct 22, 2009 and it has been the hardest thing I have ever had to go through. Watching my dad with her the last few weeks was just amasing to see the love they have for each other, but also heart breaking watching it.I am not looking forward to the Holidays at all.If anyone has names of some good books to read on how to deal with this. I have a hard time sleeping and Wednesday nights Dad and I both have a hard time sleeping since mom passed early thursday morning. I have 2 brothers and they seem to be better than I am but they don't really say because they don't want me to worry about them. I just have such a empty and lost feeling. I just miss my mom so much it hurts.  http://www.cancercompass.com/message-board/message/all,41606,0.htm Bo_Peep Wed, 18 Nov 2009 00:00:00 GMT So my father is sick with namonia(excuse the spelling). He went in thurseday& doctor made him stay til sunday. My pop seemed o.k. Happy to be out the hospital.Wanted to know about the eagles game. A nurse came out to show me how to use the antiboitics.(Im his caregiver) While my father has a port in his arm. She starts giving him the meds that they were giving him in the hospital. She uses his port for meds. In about I say half an hour my father starts coughing,Saying he is cold.Nurse says he is weezing call 911. We get to the Er. His temp was 104.3. So his in the hospital again It turns out His port(the artificial vein) is cloged.  So tomorrow they remove it.  I just cant believe what this cancer is truely like,evil.                             Suzie         http://www.cancercompass.com/message-board/message/all,41604,0.htm Suzie2009 Wed, 18 Nov 2009 00:00:00 GMT My sister has stage 4 colon cancer.  She is already disabled from COPD and arthritis and Diabetes.  Her doctor has her on more than 15 prescriptions. Tomorrow she starts chemo, and that doctor is giving her a combination of 4 drugs,  avastin, 5FU, eloxatin, and leucovorin.  They are giving her 3 naseau medications also. Nobody will tell me if this cancer has gone into other parts of her body, but only to say that it is in the lymph nodes. I want a copy of her medical records  I am a pro-active person and I need to know.  She is getting Home Health Care nurses and they have asked for a complete review of all this medication.  I have been her care giver for 20 years seeing her through each illness.  I need to know.  Marian http://www.cancercompass.com/message-board/message/all,41565,0.htm Maverickstar Mon, 16 Nov 2009 00:00:00 GMT My dad has been told that he would not be here by July 4th and that we need to call hospice. I have been told good and bad stories about hospice. Just wondering about everyone else's experiences with them. http://www.cancercompass.com/message-board/message/all,41549,0.htm njesusname Mon, 16 Nov 2009 00:00:00 GMT My mom has terminal esophogeal cancer and had an esophogeal stent placed a little over a week ago. I am interested in hearing of other's experience with a stent and if the stent was comfortable or uncomfortable and any other information or experiences that could be shared. I really, really appreciate any thing you can share that will help for the remaining weeks/months. http://www.cancercompass.com/message-board/message/all,41525,0.htm bdstokes Sat, 14 Nov 2009 00:00:00 GMT Within 3 weeks, my whole world is crumbling.  My Dad was diagnosed with Stage 3 Squamous Cell Carcinoma.  His lung function is too poor to survive a much needed operation, so his only option is chemo and radiation.  I don't even have a time line of how much time I have left with him.  3 weeks after his initial diagnosis, my Mom tells me that she has Breast Cancer.  Right now, she is only Stage 1, but she has not even had her operation yet.  We don't even know if lymph nodes are positive.  If her cancer has spread, I don't know how I will be able to deal with it.  I can't lose her too.  They have been married for 37 years and I have had a great life because of them.  My Mom is my best friend.  Imagining a day going by without seeing or talking to her is so painful even to think about.  This is all happening so fast.  I'm married and have a 2 year old daughter, and I find myself trying to maintain normalcy in two households.  I feel like no one understands how I feel.  I have friends that are supportive, and some that don't seem to get that I am stretched so thin, or that being social and having fun are not at the top of my list right now....I'm just trying to be a good daughter and mother.  There have been days when I feel like I can't breathe, some when I am so angry, and some when I am so sad that I don't know if my tears will ever dry up.  I joined this website so I had a chance to vent because I really feel like I have no one to talk to and that no one could possibly understand how devastated I am. http://www.cancercompass.com/message-board/message/all,41517,0.htm joyelaine79 Sat, 14 Nov 2009 00:00:00 GMT Have a sister with breast cancer that has metasticised to bone.  Fought with insurance company to allow her to go to Chicago Cancer Center of America, they refused to treat her because they did not participate with her insurance, the insurance company put in writing they would pay.  We then offered to pay out of pocket and insurance would reimburse us, Chicago still refused to see her.  Please do not be sucked in by their compassionate, heart-string pulling commercials, the bottom line is if you are rich enough and have the correct insurance then "you are treated as a person" (so their commercial says), but for the rest of us, we are not good enough. My sister now flys from Michigan to Houston TX,  to the MD Anderson Center and they have been just amazing.  Her cancer is stablized and she is doing well.  Thanks for nothing CC of A. http://www.cancercompass.com/message-board/message/all,41432,0.htm suns240 Tue, 10 Nov 2009 00:00:00 GMT Im so overwhelmed. I love my father cant see a day without him. Before wewould argue and hours would go passed we would be like nothing ever happened. Now, we argue over going to radiation or chemo. Also how much morphine he wants( morphine 4mg every 4hour when needed) he wants 2-3 at a time.I cant take the pills.He says ther his pills.So how do you handle it. I say lets to to radiation he's cursing the world out. He loves chemo all the nurse's. He flirts with them.Maybe I just need some me time........ http://www.cancercompass.com/message-board/message/all,41412,0.htm Suzie2009 Tue, 10 Nov 2009 00:00:00 GMT Hey, My mom has gotten worst. We have been to er about  5-6 times since the j tube was insert in  Aug 2009. I had take so many days off work since august that I am on a write up. I had to take leave to keep from being fired. My mom did not want  hospice. she want to fight . Fight to the end. SHe has  4 stage colon cancer. the cancer has spread into the whole stomach . I put in a do not resusciatate order when mom first got a infection and thought she would die. Well, mom did get better but she found out that i put a  do not resusciatate order and she was mad. I made the decison  because she is in so much  pain and that we were at the ER all the time. Well, mom is worst. On top of  another infection and fluid in her  lungs everything is shutting down. She is a lot pain and doctor after doctor has told her that could not help. she just cries while on the  ventilator. I put in do not  resusciatate order because suffering is to much for her. I want her at peace. Im not sure i made the right decison. I am the only child. Im only 27. My mom is 68. How do I go on without her? That's my mommy. http://www.cancercompass.com/message-board/message/all,41387,0.htm Pooh729 Mon, 09 Nov 2009 00:00:00 GMT I have been a caregiver to my father now for i say about 3 months now. I am 30 with 6kids.My oldest is 15. She spends alot of time after school with my pop.To me that a big help. I have a sister in Reading,Pa Which is older then me!About 38 or so.Anyway she visits my pop sometimes biweekly.Here for about 2-3 hours and leaves. My father raised me alone.( My mom was not in the picture) She is from a previous marriage. My father has her on his bank account for if anything ever happened to him.The house is under my fathers name& ex-wife(her mom).Nobody wants the house only me.I was born and raised here. Im greatful for having my father But right now i need to Know legal matters and how do i handle my family?                                                     Suzie2009 http://www.cancercompass.com/message-board/message/all,41348,0.htm Suzie2009 Sat, 07 Nov 2009 00:00:00 GMT My husband was recently diagnosed with GBM and our relationship is strained.  He has been mean to me (swearing, accusing, criticizing, interrupting).  I don't know if it would be considered verbal abuse.  Maybe it is just his frustration.  I am not happy with the change in our relationship.  He has no desire to connect intimately with me (even cuddling).  I am wondering if this is normal and if it will improve.  I also wonder how much I should tolerate.  At what point do I draw the line?  http://www.cancercompass.com/message-board/message/all,41334,0.htm juila5 Sat, 07 Nov 2009 00:00:00 GMT I am so confused right now.  My mom has GBM IV and received the standard 30 radiation treatments along with Temodar and did fine with it.  She has now had her first round of monthly temodar.  She finished up on friday and when we went to the doctor monday her b/p was 68/40...indicating severe dehydration and he admitted her to rehydrate her.  Her hemoglobin was 7.2 so she received 2 units of blood.  My question is...how do you keep them hydrated during chemo?  I couldn't even get her to ingest the pills with the required 8 oz of water.  By night three, i started giving her 1 pill at the time so that by the time she had taken all 5 she might have gotten a decent amount of water in her.  We have ended up here for 5 days right now and possibly might be dismissed tomorrow.  She is 75, has quite a few other medical issues, and it concerns me that if we are going to end up with a 5-7 day stay every month after chemo, that it might not even be a good idea to continue.  Dr said MRI is stable but that doesn't really tell me a whole lot.  With the unseen "fingers" that are lurking on the underside of the tumor, there is no telling what is going on.  From the things I have studied and read, she seems to be starting to "check out" (for lack of a better term).   For those of you with elderly parents that have received the monthly temodar, I would love if you would share some insight that might help me understand a little more about where we might be.  My dad died of GBM IV in May '08, but his journey was completely different.  I was hoping that someone has experienced some of this and can help. Thanks Cris  http://www.cancercompass.com/message-board/message/all,41328,0.htm gbm4daughter Fri, 06 Nov 2009 00:00:00 GMT What does my sister do?  My Mom is now dead weight.  We can't move her.  She has Lung Cancer, Kindey Cancer and Liver Cancer.  Amazing no symptoms or pain of any kind.  But she can't move at all she is just dead weight, she eats very little.  My sister can't lift her at all and we can't afford help, we thought they would send someone over for a few hours a day.  It doesn't make sense that if you can't manage at home they will put you in a dirty old rest home, I don't have anything good to say about them.  Anyway it would seem cheaper for her Secure Horizons to have someone come over about 8 hours a day a help get her a bath and change her pants or help her to the porta poty. She has all of her senses that is the sad part.  She does sleep about 20 hours a day though.  Hospice comes once a day and baths her for 1 hour.  That is all, and the nurse comes about ever three days or so.  Are we saying the wrongs things not to get help or what, does anyone out there have any sugguestions?   http://www.cancercompass.com/message-board/message/all,41234,0.htm jeafra10 Tue, 03 Nov 2009 00:00:00 GMT Has anyone gone to a Cancer Treatment Center facility and gone through their 10 week chemo-therapy treatment and all along you are being told that the cancer is getting better then at the 10 week mark they do some final scans and the word is that they have 90% of the cancer under control but need to do surgery to get the last 10%?  This is the situation my wife went through at the Philadelphia Center and feel that this is a standard line given to patients that in actuality have a terminal cancer but CTCA goes ahead and does an unecessary surgery just for the insurance monies.  This sounds harsh but I know at least one other patient, from the Pittsburgh area, had the same story told to them as it was told to my wife and myself. Please let me know if you know anyone that had a similar situation at any of the Cancer Treatment Centers around the United States.  Thanks. http://www.cancercompass.com/message-board/message/all,41119,0.htm georgem5 Thu, 29 Oct 2009 00:00:00 GMT I have noticed several people talking about a guide plan, who better to suggest steps to help than those of us who have been dealing with it for a long time. I will start with a few tips. 1. always get copies of all medical records 2. set up a notebook for the records. put in a list of all current dx,lab work,scans and xrays. Keep a record of everything the docs tell you (add a list of all docs and nurses along with their phone numbers and what they are for). Keep a list of all new issues to share with medical staff along with the the results of the issues. 3. I take this with me to all visits to add copies and take notes. I write all weight, vitals and med changes as we discuss it. I dont even have to ask anymore the just hand me copies. 4. add section for diet notes. 5. I always note at least 1 time a day how he has been, this is a big help when family members want more info. I will work on more but that's a great place to start.                             Milly http://www.cancercompass.com/message-board/message/all,41067,0.htm millyppl Tue, 27 Oct 2009 00:00:00 GMT I dont know how to deal with his son! 2 weeks ago the nurse practioner had a tough talk with me about Dave's condition stating he was not going to get better. One of those hard reality check moments for me. I talked to my kids about it and they agreed with her I should have a talk with his kids both of which live far away. His daughter and her family are awesome supporters, I couldn't love her more if she were my own. His son will not speak to me I have sent emails that he needs to call me and tried to call him. I gave his daughter the docs number as they said they would be happy to talk to the kids, The son got the phone number from his sister and did email that he was going to talk to the docs and would call me after that. He really makes me feel uncomfortable with the way he's acting. I worry about him causing trouble as even though we have been together for 9 years we have not married. He asked a few years ago and I said yes but have had bad expirience in the past so we have just left things as they are. Now I'm worried about his son being so weird. He has acted weird at holidays in the past wanting his mom and dad and their family only to spend holidays at exwifes house with me at home by myself, yes that was a trouble maker. I feel like he is going to start that behavior again refusing to talk to me. And his dad does not understand how bad his health really is, he gets confused really easy from all the meds for pain and has been told to stay off feet the ca has mets in right leg, hip and lower vertebreas. I'm just very frustrated. In my family we always take care of each other and dont behave this way, we invite each other to share and enjoy good times and really stand by each other in bad times.       Milly http://www.cancercompass.com/message-board/message/all,41030,0.htm millyppl Mon, 26 Oct 2009 00:00:00 GMT my husband and i are  a lone. so i have no support sytem in place,  he has the non small cell lung caner. jan. he lost the use of his left vocal cords. this is when we begin the fight.  he is giving it all he can. i just fall apart.  he goes out, goes to store, goes to the lodge. see people, i stay in. we made the trip to the dr. he get mad when i ask questions. he don't want to hear. i want to knew.  after this last trip to the hospital to drain the lung. he started to go on as if nothing is wrong.  i should be enjoying the time he has left. all i do is think about the time when he is not here. having to use are wheelchairs to get around, and public transpertation. in this crazy world. makes everything twice as hard. i use to never give up and deal find. now i don't deal at all. any advice. http://www.cancercompass.com/message-board/message/all,40631,0.htm tigerstunes Tue, 13 Oct 2009 00:00:00 GMT My Dad was just diagnosed today with advanced lung cancer. I am his primary caretaker. He doesn't fully understand (mild Alzheimers which he's treated for) so it's difficult for me to speak with him about his options. One of his doctors said they could do a biopsy and then he could take Tarceva. Another doctor advised us against that because of his weakened state. He can take care of his basic needs but he needs me here to cook and make sure he's taking his medications. Lately it's been hard for him to get out of bed.I don't know what to do about the Tarceva. The doctor who suggested it said there are no side effects. After reading about it, that's not true. I'm afraid if I start him on the pills they will take him out of the little comfort zone he's in right now. He is 93 years old. Can I have your opinions? I'm basically all alone so I have to decide everything by myself so your thoughts are appreciated.Also, would they prescribe Tarceva without a biopsy? My Dad got a PET scan which showed advanced cancer. One tumor is over 9cm and it's spread to lymphs. The doctor who doesn't think he should take treatment also doesn't think he should do the biopsy. http://www.cancercompass.com/message-board/message/all,40433,0.htm TabithaS Tue, 06 Oct 2009 00:00:00 GMT Check out Ricardo Antonio Chavira – star of ABC’s Desperate Housewives – as he shares his personal experiences as a breast cancer caregiver to his mom and two sisters.  Ricardo recently partnered with The Wellness Community (TWC) to launch the C.A.R.E. (Cancer Advocate Resources and Education) Campaign for breast cancer caregivers , which provides free resources, tips and support for those caring for a loved one with breast cancer.                              You can hear his story and learn about these resources this Tuesday, September 29, 2009 at 1pm PST/4pm EDT by tuning into a special episode of the Internet radio show Frankly Speaking About Cancer on the VoiceAmerica™ Network’s Health & Wellness Channel at: http://www.modavox.com/voiceamericacms/WebModules/HostModavi ://www.modavox.com/voiceamericacms/WebModules/HostModaview.aspx?HostId=546&ChannelId=5&Flag=1. http://www.cancercompass.com/message-board/message/all,40304,0.htm WellnessCommunity Thu, 01 Oct 2009 00:00:00 GMT My friend is diagnosed with testicular cancer.  He is a pastor so he had no insurance and has qualified for molina health insurance.  He needs round the clock care in order for him to come back home from the hospital.  His wife had to get a job to pay bills and I am wondering if there are programs or help for this family.  I am a CNA and can volenteer some of the time but I have a son with Down Syndrome that needs me when he gets home. Any ideas?  I had a identical twin that died of pancreatic cancer in March, and she struggled with the same problem.  http://www.cancercompass.com/message-board/message/all,40114,0.htm mamashole Thu, 24 Sep 2009 00:00:00 GMT i have just been assigned a stage 4   in home 24 hour care patient!help! i was not trained in specific diseases  and would like to be able to provide the best of care.any advise?  what should i expect? how do i provide comfort for my patient when  is in so much pain ?        http://www.cancercompass.com/message-board/message/all,39853,0.htm tinatcna Tue, 15 Sep 2009 00:00:00 GMT Hello,It seems that most GBM patients have seizure activity eventually. My sis was dx in July and is still doing her 6 weeks of chemo/radiation. Is there anything we should watch for ? I have noticed a slight slurring of speach and trembling in her left hand. Her husband is with my sister most of the time. Should he prepare himself for seizures or are we asking for trouble that might not arrive??  Should we all be prepared for this?As always, thanks for your responses :) http://www.cancercompass.com/message-board/message/all,39709,0.htm passionfish Wed, 09 Sep 2009 00:00:00 GMT