Whether you need help with a family member or a close friend, our online cancer forum at CancerCompass.com helps you connect online with others for valuable feedback, information and support. http://www.cancercompass.com/message-board/caregivers/support/1,0,122,84.htm Mon, 23 Nov 2009 00:00:00 GMT Mon, 23 Nov 2009 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ help--is it usual for it to leak and burn the skin? http://www.cancercompass.com/message-board/message/all,41621,0.htm grandmabev Wed, 18 Nov 2009 00:00:00 GMT Has any one heard of a FISH test for baldder cancer ? My husband 2 years after having kidney removed and chemo and immune therapy has had one done..results are "positive with caution" one cell showing changes....We have appointment friday with urologist...Im scared dont know what to expect..any else had this test ?? David has been doing well for the last year all tests and pet scan negative... I appreciate any in put sandy http://www.cancercompass.com/message-board/message/all,41422,0.htm WOLFLADY1020 Tue, 10 Nov 2009 00:00:00 GMT I am new at this, but I need some support. My husband (46) has stage 4 colon cancer. He is very sick and we get different answers from the doctors. We are going to Mayo soon, hope to get some good answers then. We have 4 children 3 in college, They are good help but I want them to go on with their lives. My mother-n-law was good at first but when I wanted diffrent treatment then she wanted she el-mail people, That because I work for hospice(cna) Thats all I see and I am not positive for my husband (we have been married for 20 years) and he only needs positve people around him. I am so mad at her because she is trying to cause problems with us at this time. The e-mail were very hurtful and people writing them only heard from her.  My husbands mother and sister  do not see the big picture and how sick he is. I do think I am positive and I do not want to loose my best freind. Cancer does not care who you are or how old you are or what kind of person you are. We will fight cancer and win,  God bless http://www.cancercompass.com/message-board/message/all,40641,0.htm anne_m_6 Tue, 13 Oct 2009 00:00:00 GMT Hi everyone.I got my ET diagnosis about a month ago. I've had my bone biop and boy that hurt. It took them 45 mins. They told me 15 mins but my bones are very very hard and they messed it up a bit. Thats not part of my ET. Everyone else that has had it told me it wasen't to bad for them. My plt count is 2000 at the moment. Im on Hydrea and so far im doing ok. I do get tired and and a bit spaced out but nothing unusual about that!! Im woundering how long it takes for you plt count to come down. If anybody can me a bit of advice i would really appreciate it.Hope to hear from youJohn.  http://www.cancercompass.com/message-board/message/all,40487,0.htm John_the_smoggie Thu, 08 Oct 2009 00:00:00 GMT HiI wonder if anyone can help with more information on Essential Thrombocythemia and pregnancy.thank http://www.cancercompass.com/message-board/message/all,40130,0.htm shanie Fri, 25 Sep 2009 00:00:00 GMT I'm a nursing student, looking for how chemo patients can find donated wigs.  I've found several places accepting donations, but where can I refer patients in need of wigs?  Thanks in advance for your time! http://www.cancercompass.com/message-board/message/all,39743,0.htm ingridc Fri, 11 Sep 2009 00:00:00 GMT HiI am new here.  My husband was diagnosed with anaplastic astrocytoma March of this year. It was inoperatable, he had radiation for 6 weeks and now on oral chemo. He has done quite well except for trying to wean off the decadron.  Tomorrow he has his follow up MRI and sees the neurosurgeon. He thinks that this will all go away and get back to his life just the way it was.  I am afraid..  http://www.cancercompass.com/message-board/message/all,39150,0.htm Lynn54 Wed, 19 Aug 2009 00:00:00 GMT I was diagnosed and treated 6 years ago for a Grade 2 Astrocytoma.  My tumor showed up again two years ago.  My current Neuro-Oncologist, Dr. Laterra is very nice, however, there is a disconnect.  After each 6 month follow up I leave more confused about how to treat my tumor.  My primary care doctor asked me to see Dr. Stuart Grossman at Hopkins for a second opinion on how to treat my tumor.  Does anyone have any information on Dr. Grossman?  I'm worried that I will feel the same after seeing him? Help? http://www.cancercompass.com/message-board/message/all,39085,0.htm Scortch Mon, 17 Aug 2009 00:00:00 GMT It's hard to sit here and write this message as the wound is still fresh. A strong person, a admirable person, a person of hope... these all come to mind when I think of my Mother-In-Law. How amazing she was in her fight... never giving up, never showing fear, always optimistic. Her fight came to an end on the 31st of May. A bitter-sweet moment in-deed. Sweet - she no longer needs to endure the pain, no more needles, no more radiation, no more wigs, no more tears, no more.... just no more. Bitter - our world's got dimmer as we can now only hear in our minds her laughter and voice, feel her love, see her smile, learn from her teachings... I occasionally loose my breathe when I think of her because it feels so surreal. She had such an amazing presence in everyone’s life she touched!!!DONATE - my Father-In-Law is in search of a place to donate her wigs locally in Southern California. Does anyone know where and how? I've done both Google.com and Ask.com searches which have led me to dead ends on locations in California. Although it did lead me here (-8Thank you in advance for your time and response.   http://www.cancercompass.com/message-board/message/all,38673,0.htm Lolana Mon, 03 Aug 2009 00:00:00 GMT If you or your loved one is in need of emotional or financial support during this difficult time, please check out www.humantribeproject.com.  This website was inspired by a dear friend, Kindra who passed away cervical cancer earlier this year.  Kindra ultimately lost the fight, but her struggle inspired Human Tribe Project and the idea that we are all members of individual tribes that unify to support a loved one in a time of crisis and that together – bound by the humanitarian spirit – we are all part of a larger Human tribe. http://www.cancercompass.com/message-board/message/all,38379,0.htm jaclyn Thu, 23 Jul 2009 00:00:00 GMT has anyon heard or has moncolongrammpathy http://www.cancercompass.com/message-board/message/all,38277,0.htm susie55 Tue, 21 Jul 2009 00:00:00 GMT Hi   Guys         My mum is in late stages of multimyloma ,but also has reflux and castlemans diseise. She has been in terrible pain and even though the pathway to care and hospital are doing all they can ,it seems so cruel she only has her hearing left she has had not even water in over a wk as she canot swallow. she is just starving to death .they have uped the morphine dose but seems they can do no more , Its a slow horrible death  and not one you would wish on your worst enermy, I lost my dad to cancer 10 years ago thought it couldnt get any worse but how wrong i was .I nursed him at home and we went into the local hospice for last 24 hours. mum has been in hospital since xmas 2008. She was transfered to local community hos with only gp care 5 wks ago but went down very fast. I feel i am letting her down and i am at my wits end to know what i can do to help her all people keep telling me is drs can be sued they have to be careful so i guess that means they cant help her . the law is so wrong in cases like this ...  http://www.cancercompass.com/message-board/message/all,37819,0.htm cassy7 Tue, 07 Jul 2009 00:00:00 GMT Hi folks,I am a new subscriber and I was searching for Fucoidan. I came across thoiis site and it seemed appropriate for me to sa a few words. I was chhecked out for prostate cancer twice about five years ago and, although my PSA was a little high, I had a series of biopsy's and there was no cancer .The rerason for this message is that I am in the later stages of Parkinson's, I used to be a distributor for the Original Limu for almost 3 years. This was a part tme job so I never developped a great income but I did get my Limu at no cost. I have since become unable to work at this and I am paying $150 for a case which is about a month's supply.I am aware of the cancer rerlief that fucoidan provides and I personally got rid of my alergies and my healing was unbelievable (from broken bones to sugeries). However, I cannot afford any more Limu due to the cost of my medication, which I currently need. So I decided that with the supplements that I already take a suppement of fucoidan would be an answer. I found a distribuutor tah sold pure fucoidan for about  $30 a bottle (60 tablets). I do not know what the recommnded dosage would be bu if it is 60 a week I am ahead!I will keep y'all posted about this annd anybody that has a comment or suggestion please feel free to send me a message   http://www.cancercompass.com/message-board/message/all,37784,0.htm rodisez Mon, 06 Jul 2009 00:00:00 GMT I am needing help and suggestions for my niece who had a Whipple Operation (Non-cancerous) 6 weeks after having a baby.  She has been in the hospital now for 10 weeks,  has had 3 surgeries, she can't eat, only ice chips, barely can walk, is being fed thru a tube to her intestine, which her DR takes in and out too often, due to it gets clogged and nothing seems to help.  She is not getting any better.  Does anyone know if this is normal or not. Our whole family is totally lost, never had anyone sick like this before. Can a patient advocate be hired, so we can get answers? Any suggestions would be greatly appreciated. http://www.cancercompass.com/message-board/message/all,37793,0.htm debra527 Mon, 06 Jul 2009 00:00:00 GMT Hi, my name is Kymm. I am a wig consultant for a company called Pretty My Face.We provide a array of lace wigs & accessories.Our team recently started a program called " Chaning Faces in CT " . However, we have decided to extend our support & services to the entire United States. Changing Faces supplies free mono top & lace wigs to medical hairloss individuals. If you or someone you know needs our assists, please contact us. You can contact us here or you can visit our website at www.prettymyface.com/medicalhelp.html  http://www.cancercompass.com/message-board/message/all,37470,0.htm Wigdonater31 Thu, 25 Jun 2009 00:00:00 GMT One of the signs of a spreading cancer is a chronic cough.She has had a cough for allergies, but it's increased and sherefuses to call the doctor.  Her next cat scan is four monthsaway....she now refuses to discuss it any more.  Anysuggestions....there was something on the lung two years agothat lies dormant and was being watched.  http://www.cancercompass.com/message-board/message/all,37479,0.htm Suncloud Thu, 25 Jun 2009 00:00:00 GMT  Here I go again .....after 2 surgeries, sigmoid and liver ,2 bouts of chemo,my life was rosy I was happy to think this was behind me....It come back.*@%#^&! Lymph node is enlarged and can not ,at this time be operated. So I will start chemo for the 3 rd time in the last 4 years....My adult single children(29 and 24) live in another country,Korea and Australia .The first time, they come back and stay for a year, since i did not die, they left again. They were angry,rude and snap and i felt bad disrupting their lives. They never ask about my health we hardly ever e-mail,last time I got a phone call was on mothers day. They act that it never happened ,and avoid to talk about....They ask : how are you mum? I say: oh ! great! and we talk only about the weather and futility's... I promised myself i did not want this added stress again. I fell sad ,i can not count on then for support or anyone else. I have no family besides them and a husband(common law) for 35 years who's selfish and I at times inconsiderate....but still at my side ,but not involved or interested .... Fear, I guess....WHAT SHOULD  I DO? deal  with this "crap" alone? i very strung mentally , i do not want pit! I will not let anyone know this time, my friends neighbors and friends at the gym ... they did look at me different and act patronising....I hate that !!!!They way people deal with , is worst than cancer itself ! http://www.cancercompass.com/message-board/message/all,37358,0.htm Esperanca Sun, 21 Jun 2009 00:00:00 GMT It will be two years in November that my father was diagnosed with Renal Cell in what was reported as stage four. In two weeks my father will walk me down the isle heathier and stronger than ever. Please remember this as you wake every morning wondering which one will be your last, we can beat this. My father is. http://www.cancercompass.com/message-board/message/all,36635,0.htm carolinedes Fri, 29 May 2009 00:00:00 GMT You know, as caregivers and patients, we hear all the horrible stories of pain and hurt and death and very few of survival and hope. When we got Dad's diagnosis of a brain tumor last February, I thought it was a death sentence.  It wasn't!  Dad underwent a 12 hour surgery to resect the tumor in his brainstem, weeks of inpatient therapy, repeated surgeries due to complications and other setbacks, months of radiation and months of chemo. And here we are 14 months after his surgery, 15 months after his diagnosis, and my dad is gaining weight, his color is good, and finally, finally! his energy is returning to normal.  He feels good, he looks good, and his last CT and MRI showed that the tumor had not grown nor spread and in fact has shrunk by a millimeter or two. I didn't know it could turn out this way when we started on this journey!  I know it's not over and we'll have to monitor his tumor for the rest of his life and we know because of the tumor type that it will regrow at some point and we'll have to deal with it then.  But in the meantime, I have my Daddy back and he has his life back - and it's a GOOD life!  A brain tumor isn't necessarily an imminent death sentence!  Who knew?  Now that I do, I wanted to share a word of hope and encouragement.  Oftentimes, it's true that treatments don't work and God chooses not to intervene the way we ask, but sometimes, treatments do work well, and God does intervene and grant our loved ones a few more years.  That gives me great hope and I hope it gives hope to others as well who may have received the most hopeless of diagnoses. http://www.cancercompass.com/message-board/message/all,36360,0.htm Merci Thu, 21 May 2009 00:00:00 GMT I am at my wits end and so worried for my sister who has VIN111.  I have recently moved to America (from Ireland), my sister lives in Ireland and is currently in hospital in Ireland for the past 4weeks so I am emailing on behalf of my sister as she doesn't have internet access in hospital!!  She is 31,  diagnosed with VIN111 1year ago (but has had these symptoms for 9 years, was treated for thrush etc all this time!!) She is in SOO much pain with this VIN111 and her Dr feels that she should not have this much pain with the  VIN111 and is bein very unsympathetic.......!! She complains of severe vaginal/vulval pain accompanied with severe itching of the afffected areas.  Her Dr has  given her 2 options for treatment; Option 1 is a topical cream-"Aldara" but she tried it for a few days at home  (prior to admission) and she found the pain even more unbearable after the application of the cream thus why she had to go into hospital for pain management.  Option 2 is for her to have skinning  of the vulva or wide surgical excision of the vulval/vaginal area  (OMG!).  After these options the Dr proceeded to tell her that  neither of these treatments are guaranteed to clear the VIN111 or to prevent it from turning into CANCER in the future and that he wants to discharge her from his care unless she selects one of the two  options of treatment!!  So she's now having a third opinion in a different hospital as to what other treatments might be available and to find out if there is an underlying problem as her pain in the affected area is excruiating (even without the application of the  topical cream!!).   She has also had a constant period for the 4weeks she's been in hospital-Drs fail to think this is a problem or related to the VIN111 or why her pain is so severe (which is unusual according to them!).  She's had erratic menstrual cycles for many years now with no reason found  for it despite lots of investigations!!  She suffers from frequent insomnia with night sweats (night sweats were investigated but no medical reason was found again).  She was diagnosed with Discoid Lupus 2 years ago (not SLE)  and has a 9month old beautiful, healthy boy!> Because my sister's Dr has questioned her pain levels which is such an insult but my sister is wondering if anyone has experienced this excruicating pain without application of the cream-she knows that applying the cream is very painful but she has so much pain from the VIN 111 even without the application of the cream!!!  I apologise for the extreme detail but I am hoping that someone may have heard or experienced something similar (not that I would want anyone to go through what my lovely sister is going through!) and may have suggestions/advice etc............ Thanks for reading this email and I truely wish all of you my very best wishes. http://www.cancercompass.com/message-board/message/all,36219,0.htm den32 Sat, 16 May 2009 00:00:00 GMT I am having a problem with my tailbone for the last few weeks.It really hurts specially when i'm sitting down for about 20 minutes.If you can please help me. I don't know what to do.  http://www.cancercompass.com/message-board/message/all,36181,0.htm lovely143 Fri, 15 May 2009 00:00:00 GMT As stated above, I lost my dad, (age 58) to lung cancer. I will not point the finger at him for being a smoker, but I was informed that even if he had not been one, he would have probably contract lung cancer anyway. My dad grew up in the farming fields of Louisiana; his first job was to flag the planes to spray the crops at age 5. He even graduated from college with a degree in Agriculture Studies. He later went into the oilfield business as a mud engineer. While working with chemicals that have been banned since the days of his youth, as well as many oilfield chems being more eco-friendly; ingestion via breathing these cancer causing agents had its effect.My dad had a plueradesia (misspelled?) on 4/25/2009; he was restrained and kept immoble so that the surgery would "take", he was able to have his meds turned down when the family went to visit, but increased at times he needed rest. He had been intibated the night before, due to a panic attack, so eye movement and hand gestures were all that were available to us. I watched a man, who was nearly 6 feet tall and over 200 pounds, because a wrinkled "old man" before my eyes. He lost nearly 125 pounds; he was diagnosed in Jan. 2009. My family (my Momma, sister, and I) are void without him in our lives. It doesn't seem real; it has caused the days to roll one into the next. I did not realize until it had been brought to my attention that I had been in my p-jays for 4 days. I have not been able to cry what ever one else around me calls "the good cry". My family doc and my shrink said it was, "Swallowing my emotions causing my body to have pain all over, rather than enduring the emotional pain." Pain killers help; they do not REALLY take away the pain, they mask it. I am an ordained minister which I have relied on my faith; if Dad took the walk of faith I believe and know he did, he is with the Almighty One. That gives me peace, but does cure the pain. My Momma and sister are living on the "Valium Cocktail" floating day to day.My sister told me (and this sounds crazy) that Dad visits her regularly. She first saw him on her little boy's toy box; later in the hallway of her house inspecting her girls' bedrooms as he always did. She has seen him walking on the property as well as smelling his presence at her home and my Mom's. My sister and my Momma are living on a large piece of family property; Dad died in the hospital but he wanted to be at home. Momma said she could not handle that. She had been in the healthcare field for years and she had taken all she could; Dad got sick, hence, bringing her back to where she wanted left behind.I'm just curious, anyone else experience these "sightings or smellings" of their lost loved ones? I know I'm not crazy..but it's like, DUH?! Anyone? Advice?  http://www.cancercompass.com/message-board/message/all,36165,0.htm Daddys_ShoeGirl Thu, 14 May 2009 00:00:00 GMT Hi,  My name is Kym, I own a Full Lace Wig / Hair replacement online company. I have a program called " Changing Faces in CT , our online store has decided to branch out our program to the entire U.S. If you are a cancer patient or alopecia client and can't receive medical remiebursment with your insurance or do not have insurance, we will offer you a partical grant totaling $ 250.00 ( this will include application if you live in CT ).We also donate a free wig & application to children twice a year. If you are iterested in receiving a grant for your unit or know someone that needs our assistance please contact us. If you are a person that would like to donate a gently used wig or a brand new one please contact us as well.www.prettymyface.com   http://www.cancercompass.com/message-board/message/all,35221,0.htm Wigdonater31 Mon, 13 Apr 2009 00:00:00 GMT Hi,I've just been diagnosed with MGUS.   After becoming ill in September 2007 with total fatigue and flu like symptoms I was referred to Rheumatology who have diagnosed FIBROMYALGIA.   Whilst doing the blood tests they also found the MGUS.My doctor seems very flippant about it and doesn't seem to want to discuss it but all the info is very complicated to understand and at 49 I'm not particularly old. Apparently my blood test was low at  0.47 LGM - What does that mean?Does anyone know of a link between Fibromyalgia and MGUS.I'm the right weight for my age, white, female, eat well and up until last year did lots of exercise, classes, walking, gentle jogging etc.   I've had various symptoms for years until I got really ill last year and now struggling to get back to normal - which seems an uphill task at the moment.Anyone out there know the answer to the questions above or in a similar predicament?   http://www.cancercompass.com/message-board/message/all,34896,0.htm DeannaN Fri, 03 Apr 2009 00:00:00 GMT Hello,My father was diagnosed with stage IV renal cell carcinoma (kidney cancer) this past November. He has mets in the lungs and just found out last week that he has 10 mets of different sizes (3 that are over 2 cm) in the brain. His optimistic doctor says that this is not good. He started whole brain radiation last week and will finish next week. He's been given 4-6 months if the mets come back (or, of course, more...we can only hope!). I had been holding out hope for my dad when we understood that he had mets in the lungs, since it seems that folks can live a long time managing the cancer via drugs like Sutent. However, this brain news changes everything. He had been exhibiting symptoms indicative of tumors (behavior and cognitive changes) over the last 2 months. He's currently on a steroid that has taken the inflammation down and is more like himself now than he has been in a long time. I just don't know what to expect after this. If anyone can offer advice and experience I would really appreciate it. I need to sort of prepare myself for what's to come. I know that everyone's experience is different, but any input will be helpful at this point since I don't really know anything about this other than what the doc has said. And I need to prepare myself and maximize "good" time that is left with him.I also live in a different state and have small children. He's receiving treatment at Duke and will go back on Sutent in a week. Thanks! http://www.cancercompass.com/message-board/message/all,34699,0.htm kateparker Sat, 28 Mar 2009 00:00:00 GMT