Latests messages posted on the CancerCompass message board patients, caregivers, and other members of the website. http://www.cancercompass.com/message-board.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/ Hello Everyone,It's 12.15 (London time) and I can't sleep.Fortunately I've put my computer on and found this website! I believe I was led by God. Having read your messages to each other I feel so encouraged and finally not alone. This can be a lonely illness.I was diagnosed in 2000. The tumor ruptured. They removed my womb, ovaries, limph glands and spleen. I was told it would never return.Fot sevenyears I flitted in between feeling really unwell and feeling great. I even stopped going for check ups prior to August 2006. But I went for my check up in August 06 and everything appeared fine. By September I was in hospital being told I had IBS (Irritable Bowl Syndrome). After a week they sent me home with a course of medication. But ny health began to deteriate even more. I contacted The Royal Marsden, my treatment hospital and they did a long series of test. At the end they told us my ill health was not related to my disease. But said they would do one more test - a CT scan. It's only then that they saw the 2 1/2 inch tumor along with a mass around the belly button. I had surgery. I was told it was incurribale and would always return.A few months ago I began to get pain from the gland in my neck. I felt unwell. A few weeks ago I began to feel worse, I felt a tingling sensation in my tummy. Some numbness. Nausea. Hiccups (everyday). Pain down my leggs. A little feverish and gradual abdominal pain. This has increased. Again I went to hospital. They think it's IBS! Fortunately, I am due a CT scan on Tuesday.I think the symptoms to this disease should be shouted from the hill top. My doctors are nice but I suffer a lot because they don't always recognise the signs and leave me to suffer alone. Has anyone had a simular experience?Thanks for listening.God bless  http://www.cancercompass.com/message-board/message/all,16927,0.htm trooshors Tue, 09 Oct 2007 00:00:00 GMT  I had a pap and it came back showing extra cells the Dr was not worried about it to much.( should he have been?)What does having extra cells showing up on a pap smear mean?He did not say to come back in 6 months and have another papHere in OZ we only go for pap's every two years unlike yours being every year. Should i go and have it before that time?Thank you and take care Midway  http://www.cancercompass.com/message-board/message/all,12220,0.htm Midway Sun, 20 May 2007 00:00:00 GMT I am Susan , Denys little sister and caregiver when she requires one My sister sent this email out today. I am very worried about the Plasmacytosis the Dr. found.  Has anyone had this before, and does it mean the Velcade stopped working?Denys wrote: My Tampa oncologist has lowered the dosage on the chemo, but it is still persisting the pain in my leg.I saw my oncologist today, and it was bad news. Before he could truly determine whether I had a neuropathy from the chemo on my left leg, he had me undergo an MRI. He told me today that the MRI showed a mass in my right pelvis. Of course I have multiple lytic lesions (like holes) there since the beginning, but the Myeloma has formed a plasmacytosis. It is already 7 centimeters. He asked if I was in pain, but I am not. He said we would watch it and if it grows I would need radiation.  Neither of us wants that!I get depressed and angry so much because, quite frankly, I am not ready to die and I am so scared of what a cancerous death encompasses. If it weren't for my back and leg, I would feel pretty good...not like I have cancer.The other problem is that every month when I begin a new cycle of Velcade I must take two vials of blood, which UAMS provided me with and have it centrifuged for a specific length of time, pack it up and haul it over to Pak-mail and 24-hr. it to UAMS. Supposedly this is to see if the Velcade is still working. My oncologist in Tampa does not have blood services, and I had a hard time finding someone to centrifuge the blood drawn by my oncologists nurse. Remember I have a port specifically for drawing blood because my veins are really lousy. Most people do not want to bother with a port so it wasn't like I could have them draw the blood and then centrifuge it. I finally got lucky and made arrangements with the lab supervisor of the hospital here to do the centrifuging...As it stands on my first chemo day, I have to go to the oncologists office have them draw the blood, run over to the hospital with it and wait while it is centrifuged, then drive over to a pak-mail and pay $40 for 24-hring the blood, drive back to the oncologists office and then start the chemo process! Needless to say it is an ordeal. The best part? The nurse at UAMS told me the blood sample was no good! On top of that? My Tampa oncologist looked over the instructions that come with the vials and said he could do all of these blood tests here!!!!!! Now I am wondering whether this is unnecessary or what...The Tampa oncologist told me he will be calling the UAMS oncologist about this and also about whether they may have overlooked the mass in my pelvis..Am I complaining? You bet!!! The oncologist here also said that there is another drug administered with my chemo drug, Velcade, which is showing even more promise. He would like to see me add it to the velcade.....another reason he wants to speak with my UAMS oncologist. Although he may be right, and two heads are better than one, working with 2 very good Myeloma oncologists is daunting. It leaves me the patient thinking that ego's are also at work here.I want to say that I have had many setbacks, and although I have good and bad days, I am constantly at work with the goal of some sort of remission. The good news is that I have not needed platelets or blood since I started Velcade, and that the bad immunoglobulin levels (IgG) in my plasma is still coming down. It was once as high as 3180, and today it is at 1080....There is a chance that the chemo could also reduce this mass and I really hope so because I do not want radiation if I can help it. For my dear friends at The School of Social Work, I am going to try and get there this week..Wait till you see my hair! Who said it comes in differently? It is curlier than ever, and I fear with a little more growth I will look like Harpo Marx! Talk about "salt & pepper"..Either the cancer has grayed me or I was so colored I never knew how much gray I had! Well, this ended up being longer than intended...and I am tired, but feel good about talking to all of you personally....Love to all of you from me,Denys http://www.cancercompass.com/message-board/message/all,18598,0.htm Bayshore Mon, 03 Dec 2007 00:00:00 GMT My Dad was diagnosis with prostate cancer at the beginning of the year, with Gleeson Score 9/10. It was not clear whether the cancer was spread or not at the time. He took radiation and Lupron injection. Now (7 months later) his PSA level has dropped from ~ 10 to < 0.05. He did a bone scan last week and the doctor says seeing a new spot and suspecting new spread. My question is, is that possible? Prostate cancer continue to spread while PSA < 0.1? Comparing the films with the ones he took before, I do see some kind of darker spot, but … And, if it is really some kind of new developement, what can/should be done?Please help. many, many thanks. http://www.cancercompass.com/message-board/message/all,17237,0.htm NT007 Fri, 19 Oct 2007 00:00:00 GMT My 12 year old dog Betty is in great shape except for the TCC she was diagnosed with in mid-Febuary. I am debating Chemo, Radiation, holistic care, etc. She is on Piroxicam and a low-carb diet but now her Kidney enzimes are getting bad, they were fine before the change in diet & the piroxicam. Does anyone have any advice for me? I am so confused and i really want to make the right decision for Betty! http://www.cancercompass.com/message-board/message/all,10604,0.htm Suzanne.j Thu, 22 Mar 2007 00:00:00 GMT I am writing because I need some advice/support.  I just got the news today that my neice, who's only 20, was diagnosed with ovarian cancer.  She is scheduled for surgery this Friday, Jan 11th and then is going to need chemo after that.  She has tumors on her ovary, on her uterus, and her adrenals glands.  She lives 900 miles away and is like my little sister.  I'm terrified and don't even know what to say or how to help her.  She lives with my mother, who raised her.  Can anyone point me in some kind of direction on how I can help and support her?  Is there ANYTHING positive I can share with her?  How can I help keep her morale up as she goes thru this.  All I can think of to tell her seems so stupid, like "imagine your healthy cells are like pacman, eating up the cancer!"  I'm lost! Help! http://www.cancercompass.com/message-board/message/all,19501,0.htm myrooni Mon, 07 Jan 2008 00:00:00 GMT My husband David had a kidney removed in Dec,  also what was described as superficial tumors in bladder. Seemed to be doing well,had 6 BCG treatments, but this week after cysto there were more small tumors, again th Dr said "superficial" we are awaitng results of CAT scan, He will need 6 more BCG treatments. Has any one experienced this ?  It seems the first treatments did not work Will the 2nd.  ?  Iknow we must wait and see but I would like to hear that the 2nd series might work better than the fis\rstThank you for taking the time to read this,God blessSandy    http://www.cancercompass.com/message-board/message/all,25589,0.htm WOLFLADY1020 Tue, 01 Jul 2008 00:00:00 GMT Hi I have terribly swollen gland, and was seen for some routine blood work to test for mono, and strep  The results for the mono and strep came back negative, but the Absolute Lymphocytes came back in the high range. 2.4  I am not sure what this is, or what this means can you give me any ideas. THanks http://www.cancercompass.com/message-board/message/all,18974,0.htm karla1 Tue, 18 Dec 2007 00:00:00 GMT Hello, everyone!I would like to ask readers' opinions and advice regarding the case of a 66 y. o.  diagnosed in 2003,  whose PSA started to rise recently. He was on flutamide since 2003 and also orchiectomy was peformed at that time. Now, in waiting for the bone scan and CT, his doctor wants him to directly start Casodex and stop flutamide. But I wonder whether or not he should have first tried the flutamide withdrawal alone for a while. I have read that prostate cancer cells might have mutated so that antiandrogens do in fact feed them instead of stopping them. To my mind, that means that stopping ANY antiandrogen for some time might make the cancer cells again responsive to hormonal treatment. My worry is that even if Casodex will induce a decrease of PSA for a while, the cancer cells will ultimately adapt to it too, and then the "hormonal weapon" is all but gone in the case of my father. On the other hand, I don't know if suspending the hormonal treatment while there is still Casodex that can be tried is not an even bigger mistake. So, I would much appreciate reading your thoughts and information you might have on the matter.Many thanks and best wishes in good health and all other respects!   http://www.cancercompass.com/message-board/message/all,12618,0.htm Help_for_father Thu, 31 May 2007 00:00:00 GMT Is anyone now taking the treatment Avastin and oral pill Tarceva? Do you know how long this ususally helps? http://www.cancercompass.com/message-board/message/all,19983,0.htm RealatorGirl Tue, 22 Jan 2008 00:00:00 GMT This is Esperanca, Feb. 2005, was given a 20% chance to live. I had colon met to liver 4 spots.( two resection, colon / liver ) ALL GONE!!!!!!! I'm felling great ,health and Happy!  My MRI is CLEAR!!!THE BEAST IS DEAD!!!!!!!!   Think POSITIVE  !  read: avastin ,my success story ! 11/12/05 page 32   colon forum    "       The beast is dead! 01/06/06 page 31 colon forumI hope this brings you HOPE! Espreranca http://www.cancercompass.com/message-board/message/all,18238,0.htm Esperanca Thu, 22 Nov 2007 00:00:00 GMT Hi,I just came across this information in net and thought it would be helpful to some, if i share it here. It is about a new technique called 'Breast Thermography', which helps in early detection of breast cancer. This technique seems to be more effective than conventional ones like mammograms and is non-radioactive, non-invasive and less painful. To know more about breast thermography, please visit the link below,http://cancernewsnetwork.blogspot.com/2007/10/breast-thermog I hope this information would be helpful to some.Thank You      http://www.cancercompass.com/message-board/message/all,16883,0.htm Sylvester Mon, 08 Oct 2007 00:00:00 GMT Hi,I just came across this information in net and thought it would be helpful to some, if i share it here. It is about a new technique called 'Breast Thermography', which helps in early detection of breast cancer. This technique seems to be more effective than conventional ones like mammograms and is non-radioactive, non-invasive and less painful. To know more about breast thermography, please visit the link below,http://cancernewsnetwork.blogspot.com/2007/10/breast-thermog I hope this information would be helpful to some.Thank You      http://www.cancercompass.com/message-board/message/all,16884,0.htm Sylvester Mon, 08 Oct 2007 00:00:00 GMT Hi,I just came across this information in net and thought it would be helpful to some, if i share it here. It is about a new technique called 'Breast Thermography', which helps in early detection of breast cancer. This technique seems to be more effective than conventional ones like mammograms and is non-radioactive, non-invasive and less painful. To know more about breast thermography, please visit the link below,http://cancernewsnetwork.blogspot.com/2007/10/breast-thermog I hope this information would be helpful to some.Thank You      http://www.cancercompass.com/message-board/message/all,16886,0.htm Sylvester Mon, 08 Oct 2007 00:00:00 GMT Hi!  It has been over 4 years since I had to post for myself in this regard.  Just went back for my first 12 month mammo which actually showed everything to be stable.  An ultrasound however showed a complex cyst 5 mm in the opposite breast.  I'm in my late 50's.  I had many cysts from time to time when younger and about a year ago had an area behind a simple cyst that was biopsied and benign.  What is concerning is it has some properties within the oval cyst which make it somewhat suspicious. I'm scheduled for a FNA hoping that is shows clear fluid and disappears entirely or biopsy will be indicated.  I'm going in the hospital the following day for a neck dissection related to thyroid cancer that was diagnosed last year.  I have been trying to stay positive as I have been thus far able to live a normal life, and I remind myself of all the really bad situations out there but sometimes it just gets to be much.  Just needed a forum to speak.  Anyone going through a similar experience with the cyst, I would love to hear from you.  Thanks! http://www.cancercompass.com/message-board/message/all,20556,0.htm Leemg Fri, 01 Feb 2008 00:00:00 GMT Some very important information regarding diagnostic imaging:.....http://www.oncolink.com/resources/article.cfm?c=3&s=38&ss=22 http://www.cancercompass.com/message-board/message/all,26134,0.htm Shemay Wed, 16 Jul 2008 00:00:00 GMT I am 30 months out from treatment for Squamos cell at base of my tongue. My recent P.E.T scan should that i have "subtle metabolism in the region of the right hilium measures up to 3.3 suv  anterior to the right pulmonary artery. Metabolism in a low paratracheal lymph node measures up to 3.0 suv non-specific. Metabolism in the lateral segment of the left hepatic lobe posteriorly appears focal and measures up to 3.5 SUV.  In layman terms, what is this saying ???  I have inlarged Lymph Nondes on my lungs ??  I had this PET over 2 months ago and a couple of days after the test, the nurse called me and said everything was OK. Then I go to the Doctor today and he lays this report on me that was over 2 months old. So, It appears that the Doc never read the report and only the nurse took it upon herslef to evaluate the results. Am I close ??  This report also states that I have right heart failure/right heart disease and possible Aortic valve disease http://www.cancercompass.com/message-board/message/all,12357,0.htm Steven A.g Thu, 24 May 2007 00:00:00 GMT A second doctor that I saw explained to me that mercury fillings is a possibilty. I'm thinking why mercury fillings, aren't they supposed to be pretty safe and  they last longer than composite fillings.      http://www.cancercompass.com/message-board/message/all,14677,0.htm Justin1967 Tue, 24 Jul 2007 00:00:00 GMT A second doctor that I saw explained to me that mercury fillings is a possibilty. I'm thinking why mercury fillings, aren't they supposed to be pretty safe and  they last longer than composite fillings. http://www.cancercompass.com/message-board/message/all,14680,0.htm Justin1967 Tue, 24 Jul 2007 00:00:00 GMT ? http://www.cancercompass.com/message-board/message/all,21253,0.htm 60year Sat, 23 Feb 2008 00:00:00 GMT I see my dr. today to find more about the spot on my lung. I'v been having sharp pains on my left side under the rib cage. Now i dont know what lung has the spot on it or not, i find out today. I'v have 9 viral infections in the past year. I get sick very easily.  I hope its nothing. My family is scared because we losted our dad to lung cancer. And the fact that iv been expose to secondhand smoke for 19 years of my life and im 34. http://www.cancercompass.com/message-board/message/all,19562,0.htm shark Thu, 10 Jan 2008 00:00:00 GMT I am 29 months out from Major Cancer treatment for "Squamos Cell" at base of my tongue. I had surgery, 3 rounds of Cisplatin, and 40 rounds of Radiation.  Needless to say, I was tore up from that intense treatment. I still struggle with many after effects that cause me to have more bad days then good. I am tired all the time and must take Methadone for the ongoing pain I have through out my entire body. I feel like I have the flu in terms of how my body feels. I ache and hurt all over. I also just feel sick all over as well. I cannot keep an appitite, nor can I keep  any weight on.  Can anyone please help me to find out what is worng with my body?? Is the Methadone causing any of the problem ? I just do not feel like doing amything most days and it is driving me crazy. I was a 12-14 hour a day man before I got sick. Now I am a 4-6 hour guy and that is while feeling sickly. :-(                                                       Help ??????????????  Steve http://www.cancercompass.com/message-board/message/all,11124,0.htm Steven A.g Sun, 08 Apr 2007 00:00:00 GMT  I received radiotherapy/resection in 1998. Can I now be a candidate for gammaknife since it has been so long? Recurrence 06' non-operable oligoastrocytoma 3. Any info would be nice.Chris  http://www.cancercompass.com/message-board/message/all,22205,0.htm chefnnails Thu, 20 Mar 2008 00:00:00 GMT my doc saids i have malt lymphoma  , i asked doc  tell me straight out do i have cancer he  said with a pause no  but i thought anything that had phoma on it is a cancer he  put me on a triple therapy to threat heliocobacter  pylori a bacteria in the stomach after that wait 6 weeks to have another endoscopy and he wants me to have and abdominal catscan  ironic thing my husbands job of 20 yrs closed down neither of us is working now we have cobra insurance but it is kicking our butts can't keep that up  i live in south carolina do i qualify for any assistance i need to have these other tests done but how   also can ayone tell me what they mean by 5 or 10 year survival rate helppppppp if anyone knows of and inexpensive insurance we can get please let me know http://www.cancercompass.com/message-board/message/all,15062,0.htm asper45 Tue, 07 Aug 2007 00:00:00 GMT I am 19 years old and my father has been living with glioblastoma Multiforme  for a year and a half now. I was just wondering if this means the end is very near since he has lived much longer than prognosis' say. I was just wondering if anyone can tell me what i can expect with the end and how long is very long to live with this type of brain cancer? http://www.cancercompass.com/message-board/message/all,13449,0.htm Roxxoutloud Fri, 15 Jun 2007 00:00:00 GMT