CancerCompass message board discussion started by Tizmary on 2/6/2007 http://www.cancercompass.com/message-board/message/all,9402,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My husband has been suffering with what we thought was sinus problems for 6 months now.  His family doctor sent him to an ENT who (in October) noticed "abnormal adenoid growth".  Briefly mentioned biopsy but didn't pursue the issue. He had his adenoids and tonsils removed when he was under 10 years old ... and heard they could grow back so we weren't alarmed and the doctor didn't stress the issue. He always sent him home with an antibiotic and scheduled an appointment either 2 or 4 weeks away.During this entire time he couldn't breathe thru his nose at all.  Caused a multitude of problems in his mouth due to the dryness.Finally, he conducted a biopsy 4 weeks ago, came back as Diffuse Large B cell Lymphoma.  The doctor didn't give him the full diagnosis before jetting off on a ski trip and asked us to schedule a visit with an oncologist (which we did).  That appt took place two weeks ago and in that time, he went thru a port insertion, bone marrow aspiration, MUGA scan, PET scan, Lumbar puncture and I think that's it...  His results are not completely returned but it looks as though it's spread to ribs, kidney and not sure what else.I have three very young kids and one step-son in college and was not able to be there when the doctor delivered the news.  But my husband told me that there's no way to tell how long the cancer's been in your body and other details like that.  Is this true?Because, I am not one to run out and point fingers, but if any of his suffering could have been avoided by that ENT "encouraging" or even "prescribing" that biopsy at an earlier date... I'd like to know about it.Again, I'm not trying to start a hate thread against doctors or anything, but my husband has been telling his symptoms to literally dozens of people now for months and nobody's acted on it until ... well, until they looked at his blood pressure this morning. Tizmary Tue, 06 Feb 2007 00:00:00 GMT I'm sorry to hear of your circumstances.  I can understand your frustration.The doctors are going to be an integral part of your husbands treatment and they will be doing much of the coordinating.  With that said, get second and third opinions on everything.  Unfortunately, they may have been able to diagnose earlier.  This is where you and he need to act as your own advocates...insist on tests, demand that they work on a timeline that you feel appropriate, seek out alternative options, research, research, research...but do it all w/o burning bridges with the nurses and docs.  Again, you with need them.  They are the experts.  Remember though, they are human and can make mistakes, too.  This is why second and third opinions are so important.  Colonel Tue, 06 Feb 2007 00:00:00 GMT You have every right to feel frustrated, and even angry. Unfortunately, doctors often miss important signs. I don't know what you can do to act on your frustration, but I certainly do understand it.I was diagnosed with chronic lymphocytic leukemia last February--stage three. For me, the diagnosis came out of the blue, with chronic fatigue as the only sign. I decided to do everything I could to both live a full life and become strong enough to beat the disease. Because I didn't want to be sick most of the time, I opted out of chemo. Instead, I have tried my own version of wellness. Which is, to laugh often. To spend much time with my family. To enjoy the sunshine whenever I can. To eat healthy foods. To drink as much water as my body needs. To travel when possible. To do what I need to do and be as productive as I can.There are many good complementary and alternative treatments out there, and I encourage you and your husband to find out all you can. I know the direction is to try to find therapies which kill the "bad" cells while leaving the good. New research is being conducted almost constantly to find better ways to treat cancer.Of course, your husband and you have to make the final decisions about treatment. But once you get over the shock, I hope you can truly enjoy however many months or years you have together. Jamilah Tue, 06 Feb 2007 00:00:00 GMT  On 2/6/2007 Colonel wrote:I'm sorry to hear of your circumstances.  I can understand your frustration.The doctors are going to be an integral part of your husbands treatment and they will be doing much of the coordinating.  With that said, get second and third opinions on everything.  Unfortunately, they may have been able to diagnose earlier.  This is where you and he need to act as your own advocates...insist on tests, demand that they work on a timeline that you feel appropriate, seek out alternative options, research, research, research...but do it all w/o burning bridges with the nurses and docs.  Again, you with need them.  They are the experts.  Remember though, they are human and can make mistakes, too.  This is why second and third opinions are so important.  How do you go about getting a second and a third opinion, when you don't have insurance?  I shall heed your advice on our being our own advocates though... and have been researching, research, and researching some more.  That's how I found this place :) Tizmary Tue, 06 Feb 2007 00:00:00 GMT  On 2/6/2007 Jamilah wrote:You have every right to feel frustrated, and even angry. Unfortunately, doctors often miss important signs. I don't know what you can do to act on your frustration, but I certainly do understand it.I was diagnosed with chronic lymphocytic leukemia last February--stage three. For me, the diagnosis came out of the blue, with chronic fatigue as the only sign. I decided to do everything I could to both live a full life and become strong enough to beat the disease. Because I didn't want to be sick most of the time, I opted out of chemo. Instead, I have tried my own version of wellness. Which is, to laugh often. To spend much time with my family. To enjoy the sunshine whenever I can. To eat healthy foods. To drink as much water as my body needs. To travel when possible. To do what I need to do and be as productive as I can.There are many good complementary and alternative treatments out there, and I encourage you and your husband to find out all you can. I know the direction is to try to find therapies which kill the "bad" cells while leaving the good. New research is being conducted almost constantly to find better ways to treat cancer.Of course, your husband and you have to make the final decisions about treatment. But once you get over the shock, I hope you can truly enjoy however many months or years you have together.I really appreciate your insight.   I have heard of alternative treatment, but haven't gotten that far in my research yet... because you hit the nail on the head - I'm still in shock.I shall look into it though and share with my husband, because he's lost nearly 40 pounds and something as agressive as chemo really isn't a pliable option at the moment (until he gains some back)... however, though his other symptoms are really hindering his quality of life at the moment.  So that has to be taken into consideration.I believe in laughter too.  It's a very important part of each and every one of my days... even yesterday and today.Again - thanks!PS if the board moderator happens to see this - thanks for the note to let me know the post had been moved. I'm actually a moderator myself on a cable tv network's website LOL, but a n00b here. Tizmary Tue, 06 Feb 2007 00:00:00 GMT If he has CD20 positive DBCNH you might look into Rituxan (rituximab) to help things until he is strong enough for chemo. I have a friend who achieved remission on a Rituxan only regimen for Diffused b-cell. Phaedrus Tue, 06 Feb 2007 00:00:00 GMT The Colonel is absolutely right. All you can do now, is find other doctors and opinions. My husbands' surgeon - I made my feelings regarding his diagnosis and how it was poorly handled (it took six months with them saying he had sore throat, he has esophageal cancer) then, first it was a major operation, no chemo or radiation first. When they came out 4hrs later from a 12hr operation. I was not happy. I was angry at them all. And his surgeon told me "Now Sonda, you do not want to burn any bridges here." So, I did let them care for him until, I could get him somewhere else, that wanted to TAKE CARE of him. As a person. Not a diagnosis with statistics attached. If you are looking for cure or not - You need to be surrounded by those who support the will to live. It is not false hope, just positive input. Those who are sick know - THEY know what is happening to them. They know what they can take, they know what is going on with thier bodies and thier disease. TRUST what they tell you. Unless they say they are fine - then you worry. Then you have to get creative with your questions. You have to take control now.  Lou38s Tue, 06 Feb 2007 00:00:00 GMT  On 2/6/2007 Tizmary wrote:My husband has been suffering with what we thought was sinus problems for 6 months now.  His family doctor sent him to an ENT who (in October) noticed "abnormal adenoid growth".  Briefly mentioned biopsy but didn't pursue the issue. He had his adenoids and tonsils removed when he was under 10 years old ... and heard they could grow back so we weren't alarmed and the doctor didn't stress the issue. He always sent him home with an antibiotic and scheduled an appointment either 2 or 4 weeks away.During this entire time he couldn't breathe thru his nose at all.  Caused a multitude of problems in his mouth due to the dryness.Finally, he conducted a biopsy 4 weeks ago, came back as Diffuse Large B cell Lymphoma.  The doctor didn't give him the full diagnosis before jetting off on a ski trip and asked us to schedule a visit with an oncologist (which we did).  That appt took place two weeks ago and in that time, he went thru a port insertion, bone marrow aspiration, MUGA scan, PET scan, Lumbar puncture and I think that's it...  His results are not completely returned but it looks as though it's spread to ribs, kidney and not sure what else.I have three very young kids and one step-son in college and was not able to be there when the doctor delivered the news.  But my husband told me that there's no way to tell how long the cancer's been in your body and other details like that.  Is this true?Because, I am not one to run out and point fingers, but if any of his suffering could have been avoided by that ENT "encouraging" or even "prescribing" that biopsy at an earlier date... I'd like to know about it.Again, I'm not trying to start a hate thread against doctors or anything, but my husband has been telling his symptoms to literally dozens of people now for months and nobody's acted on it until ... well, until they looked at his blood pressure this morning.Dear TizmaryThis is the first time I respond to someone. I had signed up here over two months ago. When I was blowen away after hearing that my husband has stage4 brain cancer. And all he had was a head ache. If I can tell you something you and your husband are going to have to do a lot of research. When I found this out I was felt like the bionic woman on turbo learning. I got no this right away. And I think that this was important because cancer is very, very aggressive. And you have to fight it with all your might. I learn every day. Let me just tell you very short where my husband is today. After finding out about what a horrible cancer he had, I put him on an all alkalizing diet. Because cancer feeds on acid. Taking away the acid the cancer has nothing more to feed on. So altimatly starving it. He is still on this diet. Oh he was diagnosed end of November 2006. I wil later give you some tools that were helpfull to me. My husband has just finished 6 weeks of radiation and chemo. Thank God. He has had little side affects. His blood is Ok so far as well. You see I was able to build his immune system up before all this therapy started. I think that this gave him a fighting chance. Now he is to rest and I think that they want to give him more chemo in 6 weeks. I do not think that we are going to do this. I think that we can fight this our own way. Or give it all we got. Here are some of the tools that helped me so far.web site www.cancertutor.comBooks: The bone building solution by sam Graci, Dr. Leticia Rao and Dr. Carolyn DeMarco. This book helped with understanding the alkalizing foods and knowing what the very bad acid foods are. On cancer tutor you will also find a list of acid foods and alkalizing foods. I used this as my grocery list. Them I took these foods and got creative. Trust me it is a lot of work but your husband life depends on it and your familly. I hope that you find it to help you.Book: Natural Cures "thry don't waht you to know about" by Kevin Trudeau. This book was sent to me by a friend and boy is it interesting. If I can stress somethings that have been helful to me: As friends to help you ( like research, tending to the familly, doing some of the shopping etc.) this helped me a lot. Another thing, don't trust just the doctors. Ask a lot of questions but get your info first from your research. Get copies of everything, blood work ( get to know how to read it your self as well ) any and all test results. If your husband is taking medication find out what the side effects are, and not just what the phamacy gives you but research it on the net. They do not let people know all the side effects. Trust me I know my husband became a steriod indussed diebetic and know one told us.In closing I hope that you will find these tools helpfull and to know that you have a long road ahead but there is future. Stay strong, study hard and laugh a lot. There is a lot of truth to humor. (melitonin) For The Long Haul Wed, 07 Feb 2007 00:00:00 GMT Sorry, haven't posted in a while.He passed on 2/13.Long story short. While in the hospital, they realized he had a staff infection. On friday they did a scope to check for heart damage. He came out of the twilight/anesthesia briefly and fell back asleep.  Somehow his airway become obstructed (he couldn't breathe thru his nose due to tumor) and had a massive heart attack.Scope revlealed a perfectly health EKG/heart.He never regained conciousness. Tube was removed on Monday evening at 5pm and he passed at 11:30am next day.I am totally in shock.  We knew the cancer had spread, but didn't expect this at all.I want to thank you all for the replies - even though I wasn't able to individually respond to all of them.  Tizmary Sun, 18 Feb 2007 00:00:00 GMT TizMary,I am so so sorry for your loss. Can't explain in words how i felt, had tears rolling in my eyes, couldn't say to anyone else around me in the house why i was crying. All I can say is he is in better place and in good hands (God will take care of him). God is with you and will guide you through. Be strong, and we have to be strong.If you need any help, we are here for you.  Lifey.  Lifey Thu, 12 Apr 2007 00:00:00 GMT Your husband is a very lucky man that he has you for a wife. My brother who has advanced non small cell lung cancer was not so lucky.  His wife  turned on him like a pit bull.  She acts like he woke up one morning and decided he wanted to be sick and ruine her life..the problem is that by the time he told me about some of the things he was going through and what she was doing, he was getting sicker and is now facing probable death.  I believe that alternitive treatments are available and I will look into this avenue.  God bless you and every person out there that is fighting cancer of any kind. Just reading some of the stories has helped me to know that I am not alone in this!   Asisterslove Tue, 15 May 2007 00:00:00 GMT