Latest Other Cancers discussions http://www.cancercompass.com/message-board/cancers/other-cancers/1,0,119,34.htm Thu, 24 Jul 2008 00:00:00 GMT Thu, 24 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Is anyone familiar with MPNST (malignant peripheral nerve sheath tumor)? It is common in NF (neurofibromatosis). My 14 y/o son was diagnosed with MPNST 11/07. He had a 9x12 cm mass removed from his abdomen, which grew back after three weeks. Since 11/07 it has remained stable. He has had a total of five lung nodules removed, most recently 7/21/08.He has been on Etoposide and Cyclophosphomide since December on a three week cycle with one week off in between. He may be starting on Thalidimide soon as it has shown to reduce blood flow to scarcomas.Any information anyone can give me will be much appreciated.God BlessNoelle    http://www.cancercompass.com/message-board/message/all,26374,0.htm Noelle66 Wed, 23 Jul 2008 00:00:00 GMT My mum has been diagnosed with stage 3 primary periitneal cancer.We live in the uk and we have been told that here they do not operate they just treat with chemo (carboplatin and tax   )6 doses in total over a three week period at a time. We have read quite a lot that in America they do debulking surgery to remove various organs and have asked my mums specialist about this but they say this is not always the right approach and can end up spreading the cancer, Does anyone know anyone in the uk who has had surgery for this cancer and also in america whether they have looked at the two options, chemo only versus chemo and chemo with operation.Thanks in antipation for your response http://www.cancercompass.com/message-board/message/all,26331,0.htm cosette Tue, 22 Jul 2008 00:00:00 GMT anyone heard of it? http://www.cancercompass.com/message-board/message/all,26224,0.htm SaraE318 Fri, 18 Jul 2008 00:00:00 GMT hi i posted  here last week cause my mom was diagnosed almost 3 months ago with cancer how ever they didnt know where it was they first thought it was in her bone they tested and said no the they thought in the blood but said that to came back ok so they then said it was in her gallbladder well on saturday that just passed  she was having pain i her right leg and hip and couldnt move it  so i took her to er  and they ran blood test and e rays and kept her they called me sunday and said it showed cancer all through her liver, gall bladder and pancreas and going into the bones. they said her right hip and pelvis is broke due to cancer so they are now giving her at most a few weeks they took her off everything not that she was on anything other then water intervenisly and possably some other meds im not sure really but they said theres nothing they can do for her at this piont so thier just giving her pain meds and thats it yesterday she looked awful we thought she was going to go last night but tody she looked and felt alot better its hard to believe that in just 3 months she could go from being an active healthy person the dieing in a matter of weeks http://www.cancercompass.com/message-board/message/all,26100,0.htm babydreams Tue, 15 Jul 2008 00:00:00 GMT My dad was recently diagnosed with benign urachal tumor.  His doctor at Sloan-kettering opted not to do surgery.  But from limited research on the internet and this message board, benign urachal tumors should be removed.  There is so little information on this topic.  I would appreciate any more info or input.   Thank youMaria http://www.cancercompass.com/message-board/message/all,25596,0.htm Thoivan Tue, 01 Jul 2008 00:00:00 GMT As a result of Vaso-Vagus Syndrome and a professional dancing career, I have Peripheral Neuropathy of the feet. I have no pain except when and after walking. My feet are swollen on the soles and sometimes over the instep; they are also numb and have low grade 'lightning' itching and tingling. I have tried the new kinoki Japanese foot pads, but they have had no effect. Neurotin does not reduce the swelling; nor does the antidepressant Paxil or tranquilizer Ativan. I eat pretty healthy but need to cut down on sugar - however I am not diabetic. My shoe size has increased from an 81/2 narrow to 91/2 medium. This PN condition started in 1986 and doesn't seem to be improving. Any similar conditions out there? Just wish I could control the swelling - the numbness and low grade pain I can live with. Thanks in advance for any response. http://www.cancercompass.com/message-board/message/all,25075,0.htm Marga St John Mon, 16 Jun 2008 00:00:00 GMT I believe it is time for my father to make a switch to a different doctor and I am looking for advice.  MD Anderson or Mayo?  How do I go about finding a doctor who treats this desease and is truly an expert?  Right now dad is back in the hospital for extreme lack of energy.  Mom says he has been in bed all weekend.  He is 70 and diagnosed only a month ago.  So far no treatment other than transfusions which are not working.  Help!  http://www.cancercompass.com/message-board/message/all,24827,0.htm mopunkie Sun, 08 Jun 2008 00:00:00 GMT Hello I am 38 yr old Female and I have a Diagnosis in the process of confirmation for Myelofibrosis. I have had two BMB in the last month and both were dry taps!!!  Has anyone else found this to be a common issue for MF patients. They have tried several locations and no luck. I have hgb of 8.8 and rbc and wbc stay right on the boarder or just below normal. Platlets are on the high side of normal... I am being seen at MD Anderson they are wonderful. I have weekly iron infusions and aranesp treatments for chronic anemia. My spleen appears to be normal and my karyotype came back normal. but they were unable to do the cryogenic test due to dry tap.  I would appreaciate anyone who has any experience with MF who can chat lab results with me. I have doing alot of home work but would be nice to know what to expect and when to be alarmed, Seems like everything is alarming right now :) trying to stay patient while I wait for the second BMB results they will all be back on June 17th Long wait ..............I am just so tired all the time. Making the bed has become an event. I would full time in an office environment and alot of hours. energy drinks and G2 water and b12 shots seem to help. I also had a gastric bypass (rouge n Y) in 2002 (lost 174lbs) but I have absorbtion issues that dont help the situation. Makes some meds a challenge to get orally. http://www.cancercompass.com/message-board/message/all,24815,0.htm bubbles77450 Sun, 08 Jun 2008 00:00:00 GMT My father was recently diagnosed with MF and I am gaining vast knowledge on the subject however there is still much I wish to ask.  He has very low platelets and a very enlarged spleen.  Drs are suggesting splenectomy.  Also are suggesting he take Hydroxyurea.  By definition this seems to contradict his symptoms.  (Spleen enlargement is not as responsive to hydroxyurea and might require a higher dose (2-3 grams/day). (stated on the MPD website) This may worsen anemia or low platelet counts)  I am confused.  I also worry that splenectomy will lead to liver problems.  He is transfusion dependant 2x wk.  This diagnosis has been devistating and releiving at the same time.  We knew something was wrong when he kept losing weight and his energy was so low.  Now we know why.    http://www.cancercompass.com/message-board/message/all,24801,0.htm mopunkie Sat, 07 Jun 2008 00:00:00 GMT May 1st 2008 I had surgery to have my tonsils right and left ones taken out, the diagnoses was they were so very badly infected that the doctors did a lab test on them and found both of them to be poorly differential squamous cell carcinoma, which I have no idea what that means, as of now. My throat doctor is making a appointment at the local cancer center here for them to do a cat scan and bllod work, is there anything that I should also ask about when I meet with these doctors?After reading some of these messages there is good reason to be optimistic, the only part that makes me nervous is the swallowing part. I already have that problem at times and other times I'm fine. Then there the question about chemo, I don't understand the difference in that and radiation. I have a very strong will power to live cause of my family and my belief in our Lord.He is where I will get most of my strength and from my husband whom I just met in Nov. 2006 we got married in May 2007 and he gets sent to Iraq for a year and now this has to come about with me and some state that you could have up to 10 years to live with this kind of cancer, it is very scary to think about. I'm glad that I found this site cause I believe this will help me also to talk to others who are going thru  the same thing.Thanks http://www.cancercompass.com/message-board/message/all,24656,0.htm t&j11106 Tue, 03 Jun 2008 00:00:00 GMT ;Hi All --I have been contacted by a mom with a 3 yr. old daughter with neuroblastoma of the adrenal gland.  The child has been under treatment for the past  months and recently has been having large doses of major chemo's.  Do you know of anyone who has been through this journey?  Do you know of any tips which might help this mom to cope?  All help gratefully appreciated.  Cheers,  Cath       http://www.cancercompass.com/message-board/message/all,24529,0.htm poppy/cath Fri, 30 May 2008 00:00:00 GMT Is it normal to experience unbelievably slow access to care when you are seeking cancer treatment?  My Dad was recently diagnosed with Cancer of Unknown Primary origin.  The oncologist he was first referred to on an asap basis had to first cancel his appointment, then was informed that he had limited time left to live and should not even bother seeking treatment.After this, we arranged for a second opinion at a different cancer center.  Although the doctors there are much more caring than the original oncologist who simply wrote him off, it still feels like we keep hitting the proverbial brick wall.  The urologist that the doc's referred him to (again w/ a form marked "ASAP") won't even see him to evaluate whether he needs a kidney biopsy until he looks at the C-T scan images to see if they look suspicious as he doesn't believe that PET images are reliable re: kidneys. (The mass near the kidney was initially determined to be a cyst until it lit up on the PET image.)  As of yet, no one has biopsied his liver where most of the met's are.  Meanwhile, my Dad has what seems to be a very aggressive cancer that is widely metasticized and no clear plan as to diagnosis or treatment.I understand that healthcare in this country is fractured, that managed care is a system run by mental midgets, and that individual doctors are doing the best they can, but still is there no way to speed things along?  http://www.cancercompass.com/message-board/message/all,24310,0.htm howtocope Fri, 23 May 2008 00:00:00 GMT Whatever cancer you have, please be aware of two things:1) People sell things to desperate people.  It's the American way.2) Treatment in America is not the same (and I believe is worse) as treatment outside of America.  Farrah Fawcet....My father went to VCI in CA out of desperation.  His treatment was supposed to be high temperature treatment of nodes.  The website was an ad.  I warned people of this.  The small print mentioned radiation.  His jaw was already crumbling.  They radiated him more - his wishes and he's not stupd, just desperate. They sent him home for quality of life but by then, he had none and passed away about one month later (after being in the hospital most of that time). Dad went to VCI in CA for hope and out of desperation.  When he arrived home, he told us it was a mistake.Be wise in making your decisions.  Don't jump even  though I know time is of the essence. He came home cancer free *I believe that" but he was not my dad when he returned and passed away quickly and in pain.  He died from an upper respiratory  infection. VCI wanted nothing to do with him at the end (their end) and said they didn't cause the upper respiratory.  That may be true but in their ads, the fine print, while they use 20% less radiation than other treatments,  if one's jaw is already crumbling from radiation, why in the world would you use radiation as a continual  treatment?  It just doesn't make sense. US Conumer beware. It's an industry promoting hope.Buyer beware and good luck to you.  We need to accept death better in this country.  It would cause the industry to crumble. --A Smart Daughter Good luck to you all.  Don't jump at ads.   http://www.cancercompass.com/message-board/message/all,24298,0.htm realitycheck Fri, 23 May 2008 00:00:00 GMT Just wondering why are there no postings for '08  http://www.cancercompass.com/message-board/message/all,24163,0.htm catrudy Mon, 19 May 2008 00:00:00 GMT My husband has been a thymoma patient since 1999.  He has just recently found out that the cancer has metastasized to his spine.  Has anyone else experienced this? http://www.cancercompass.com/message-board/message/all,24130,0.htm dawnrodger Sat, 17 May 2008 00:00:00 GMT My wife was diagnosed with a glioblastoma multiforme grade iv in Feb.08 and this was dbebulked surgically.She has just completed radiotherapy and is at home.She is confused with poor speech,visibility memory and mobility.We'll get through it,somehow. http://www.cancercompass.com/message-board/message/all,24039,0.htm pedro49 Thu, 15 May 2008 00:00:00 GMT has anyone out there have or had a cancer that starts in the neck called merkles cell? it is rare but i can't help but think that someone on this site who has had head and neck cancer has not heard  or have it, it is a cancer that starts in the 3rd layer of the skin and usually starts with a neck tumor. most people with this cancer have it on the top of the skin where it can be seen but mine was deep in the layers. it is agressive but i am in remission now. they found it because it went on my lung, but the whole time it was hiding in the neck...weird...thanks anyone? http://www.cancercompass.com/message-board/message/all,23777,0.htm jusykitty Mon, 05 May 2008 00:00:00 GMT My husband developed a neuroendocrine (small cell)prostate cancer, initially limited stage.He relapsed 4 months afterCDDP-VP-16 chemoradiation(etoposide+sisplatin). He now has bulky adenopathy and liver metsand he will be started on 2nd line chemo(carboplatin+topotecane).Does anybody know another therapy? A cancer medicine that called Avastin is recommented for this type of cancer?Thanks http://www.cancercompass.com/message-board/message/all,23728,0.htm EvanS Sun, 04 May 2008 00:00:00 GMT Hey I have a question I have a family member that is in the hospital for the whole week because they are doing test to see what kind of problem he has!They say that he has a tumer growing around his hart and going up to his chest hear his neck...I dont know how to explain this but if someone knows what it could be I would really want to hear from you.Thxs Xana http://www.cancercompass.com/message-board/message/all,23555,0.htm xanapalves Tue, 29 Apr 2008 00:00:00 GMT I'm wondering how to help my spouse cope.  He is VERY caring and supportive, but sometimes gets down "thinking about living without you".  We are new at this as I've only recently been diagnosed.  There are no support groups in our area. Anyone have suggestions?Thanks - Bee Dee http://www.cancercompass.com/message-board/message/all,23310,0.htm BeeDee Tue, 22 Apr 2008 00:00:00 GMT Hello,  I have been reading the message boards for a while now and figured it was about time for me to post something myself.  My name is Dee, I am 27 years old and recently (sort of) diagnosed with ET.  I originally presented to a hem/onc in 1999 with an elevated platelet count.  He just blew me off at the time.  Recently, my PCP (I've sinced moved into a different state) referred me to another Hem/Onc.  I have had platelet counts between 4-600,000 since 1999. I've been on Hydrea and asprin for 2 weeks now. So far so good... little nauseous in the morning, but other than that, the only thing that really bothers me is the constant exhaustion.  (but to tell the truth, I've been tired for about 2-3 years now, so I don't think that has anything to do with the Hydrea).  I wanted to see if anyone has any data regarding life expectancy in young people with ET?  I've done alot of digging in medical archives (I'm lucky because I have access to ALOT of medical info, I work for a large medical research hospital)... what I've come up with is: life expectancy is about the same as the general population, or 10-15 years.  It's the latter that concerns me.  I'm 27. I've probably had this since at least 1999.... so that would put me at about 9 years with this.  Kind of a scary thought.  Well, I'll stop rambling for now, but any information anyone can provide is greatly appreciated.   Thanks, Dee http://www.cancercompass.com/message-board/message/all,23305,0.htm Sleepystudent Tue, 22 Apr 2008 00:00:00 GMT Hello, havent posted in a while on my mom... She is about to finish up on her chemo. She has two more rounds.. She had her Cat Scan yesterday and was given very good news as well as her blood test showed good news as well. Dont remember the numbers but they were very low. Im so happy for my mom,, but just couldnt pull myself together to share the same excitement. Im not sure that her and my dad know the faith of this cancer. Im not sure the dr., have explained anything to her. Am i wrong for this, for not being happy for her. I mean i am,, but am still sad. Because i know this cancer as soon as you think you are in remission,, it comes back full force. And i read that when you belly starts to fill up with fluid, does this mean its close to the end?? My mom has stage 4 PPC. It was in her liver, stomach  and in spine and lyph nodes. She seems to be wearing thin to me from the chemo.. But still has the perfect attitude, which i guess is all she needs.. Shes great seeing her so strong and still living and doing the things she loves. It just really makes her tired doing these things and then is in bed for a couple days after. Anyway,, thanks for sharing all your stories.. http://www.cancercompass.com/message-board/message/all,23107,0.htm twithers Wed, 16 Apr 2008 00:00:00 GMT I have had symptoms of POEMS for several years and no doctor has every been able to figure out what was wrong with me.  Finally after a month and a half my new neurologist diagnosed me with POEMS.  I do have all 5 of the categories.  I was concerned about this being passed on to my children.  She said this is not hereditary.  I am going to see a neurosurgeon on Thursday to see about a lesion that is in going into my spinal cord.  Has stem cell transplants been successful for anyone?  Is mayo the only place doing research on POEMS?  Is anyone have a research studies on it? http://www.cancercompass.com/message-board/message/all,22818,0.htm royalcrimson4u Tue, 08 Apr 2008 00:00:00 GMT I have posted here before and on other sites and am still looking for someone who can share their experience with multiple brain metastasis, the treatment they had, the side effects they experienced and the outcome.  In her case, this is a metastatic cancer of unknown primary-CUP.  No primary was ever found in her neck, her lungs, ovaries, breast, etc.  Just tumors to the brain.In March of 2007, my wife had multiple tumors removed - 1 large on surgically, the four others with Gamma Knife.  She then had 30 days of whole brain radiation.  She is just now showing some of the cognitive effects of the WBR, but they are subtle.If someone else has a similar experience or has had multiple treatments with gamma or cyber knife, as it appears she may have, I would appreaciate hearing your story.  If someone knows what the real prognosis is for this type of disease I would like to hear that, too.  We need to make those arrangements as well.  The internet is a dangerous place for statistical information when it comes to cancer, especially on CUP!!Thanks  http://www.cancercompass.com/message-board/message/all,22551,0.htm ohimick Mon, 31 Mar 2008 00:00:00 GMT My husband was diagnosed with cancer six weeks after our wedding in 2004 and he has been battling it ever since.  He is only 34 years old and it has been so difficult watching him go through this.  Has anyone tried any clinical trials?  We are out of chemo options so we are looking at starting a clinical trial.  We had such a hard time even getting a diagnosis in the beginning, very frustrating.  My husband has had 4 major surgeries, 10 different chemotherapy drugs, and many radiation treatments.  We haven't gone more than a month without treatment.  The past month we have been in and out of the hospital due to a new tumor in his small intestine.  We are both in need of some good news.   http://www.cancercompass.com/message-board/message/all,22536,0.htm Pats75 Mon, 31 Mar 2008 00:00:00 GMT