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Seperated with Stage IV NHL

LCS
Posts: 2
Joined: Mar 2004

I was diagnosed with small cleaved cell follicular Non-Hodgkins Lymphoma in 1997. It was stage IV when I was diagnosed because it was in my bone marrow. I went through 7 chemo treatments of CHOPS. My marriage ended in 2000 and I felt like my life was over. I drew alot of strength to deal with my disease from my happiness in my marriage. I was very depressed for a long time and was't sure if I was strong enough to make it thru this ordeal and the cancer. I am dealing with the depression alot better. My friends and family do not really understand how scarry it is to live with this alone. I am losing my insurance the end of March. I was covered for 3 years under my husbands company policy. To continue a conversion policy with Blue Cross my insurance will cost $852.00 per month. My Lymphoma was in remission but has returned. I am going to need treatment within a year. I would like to know if someone with my stage of Lymphoma is eligible for Social Security Disability or can advise a better solution to my insurance situation.

chicagolaw
Posts: 5
Joined: Mar 2004

I was diagnosed with the same type of lymphoma about 2.5 years ago. My MD took a wait and see approach and to date, I've had no pharmacological treatements. My nodes grew very slowly until last fall when I notice a significant amount of growth, particulary in my neck, under my jaw and groin areas. I visited my MD in January. CT scan confirmed what I already knew. In fact, the MD asked if I was having troulble buttoning my shirt collar and suggested that I start to think about chemo.

Instead, I decided to try a high pH protocol and made a complete change to my diet, eating only foods that are nutritionaly valluable. I started thisw regimen about six weeks ago. In these few short weeks, my nodes are now half the size they were!

The fundamental substance taken in high pH therapy is Cesium. There is a lot of information on the web about Cesium. You can do a search for: high pH thearpy and you will find volumes of information.

I don't know if the Cesium will cure my cancer, but based on the results to date, I am quite hopeful. I have also communicated with others who followed the same protocol as I am and, without exception, have heard only positive things. I talked to a woman in California who told me that she had nodes removed, took chemo and radiation, and tested negative for about a year. Then the lymphoma showed up again very agressively. Her MD recommended she immediatley begin a new course of chemo. She refused and opted for high pH therapy instead. She told me that after about nine months, she has now tested completly negative.

If you would care to call me about this information, feel free.

Don Engel
312-229-7900

savedbygrace
Posts: 9
Joined: Mar 2004

LCS, I am so sorry to hear of the return of your NHL> Have you looked into state medicade? Your doctor should be able to help you and verify your condition to the right people. You are not alone."For He Himself has said,I will never leave you,nor forsake you." Hang in there.

serangels
Posts: 10
Joined: Mar 2004

So sorry to hear about everything that you have gone through.I know that cancer if very trying on a marriage and even though people try to understand, if they haven't experienced it - they really don't understand. I don't know a whole lot about ss, and not knowing where you live or your financial situation - but medicaid is always an option. And you may be able to qualify for social security disability. If you need further assistance I will be glad to help you research it - and your oncologist would be a good place to start - he would be the one to write your letter of disability. good luck and if I can be of further assistance please e-mail me at serangels@yahoo.com

peenie
Posts: 2
Joined: Apr 2004

I was diagnosed with Stage I, Type B, Follecular non-Hodgkins Lymphoma in October 2001. I believe my health problems were caused by stress. I was divorced after 28 years of marriage not long before my diagnosis. I
went through 6 treatments of CHOPS & Rituxan and
now 2 1/2 years later I am fine. I applied for disability through S.S.I. 6 months after my diagnosis. I am still waiting. I just jumped through the last hoop which was an appointment with two of their doctors and I am now waiting for the Judge's decision. Fortunately, I had disability insurance through my employer and that kicked in since I was not able to return to work. At least three doctors have said that I am permanently disabled. Still no S.S. I need the Medicaid benefit that comes with S.S. I pay $420.00 per month to Group Health for my medical coverage which is pitiful. I estimate it costs me at least $5000.00 per year in medical bills and insurance premiums. I have to have a CAT SCAN every 6 months. The tumor damaged the left side of my body and I have problems with my left leg and left arm. I am soo happy to be alive and well, however, that I could just "SHOUT". I am a survivor - you are one too. My cancer was awful and scarey, and I am still scared, but I think my divorce was even more painful than the cancer. If you need to talk I am kikinichols@comcast.net.

tkb1943
Posts: 1
Joined: May 2004

My husband of 34 years was diagnosed with late stage non-hodgkins lymphoma, Burkitts Type in late April of 2002. I know how lonely you must be without your partner! Mine was my Soulmate. Within 2 months he was gone, and it was significantly caused by the treating Doctors ignorance, or lack of knowledge! We were never told that his heart was very bad after the first chemo session, which a nurse told us had a 98% mortality rate, which the Dr. never said. In fact this man never said anything to us, but have it and you have a 50/50 chance of survival, and if you don't, you'll die. We didn't know much, and he told us nothing! Although I am on the other side of the coin from you, I know how much loneliness and being frightened can drive a person crazy, and no one really understands! Any time you care to talk, I'll be here to listen. I would have never left my husband, but some people aren't set up like caretakers, as my Reverend says I am. Perhaps your partner loved you, but just couldn't handle everything. I went through everything from biopsies, bone biopsies, etc., with my love, and neither I nor him would have had it any other way. I am so full of anger now, because of the Doctor, whom I turned into the State board of review. Getting the correct treatment, carrying from your Doctor, the right attitude, which we all need in times like these, along with a PARTNER is very important. I could write a book on the signs that my husband has given me since his passing. I'm an avid believer in God, and I know, from his signs, that he is free from pain, etc. I just want you to be able to talk with someone, who understands just how much you are being torn apart. Not just by the Cancer, but by the loneliness. Some people don't realize how the loneliness can also affect your mental health also. Everyone needs a shoulder, and especially you! Feel free to contact me anytime, night or day. I don't sleep much, and I can bet you don't either! Like I said in the beginning, I'm on the other side of the coin, but the knife of loneliness and pain, and being frightened, cuts a similar path. Remember, somebody Loves You!! A Caring Friend, Karen

ps. I have a nephew who is currently batteling colo-rectal cancer re-currance. You should be able to get help, while you can't work. The Doctors need to write a very personal letter, in your be-half, to let Socoal-Security know , that you are not going to be able to work for a certain length of time. As when you should contact the SS people, call and tell them your situation, probable chemo again, and ask them, when the Doctors should get a letter ready to send them, in your behalf, so you can have the ss, when you need it, It may be that if your Doctors believe it is necessary for you to be on SS right now, because you need to get ready for the chemo, they can draft a letter up for you to take to SS, along with their beliefs on your need to be on SS at this time. If your current Doctor(s) aren't that carry for you, do what I did, when the first Dr., who done the damage messed up, I fired him and got another, but in my husbands case, it was too late, it was irreversible damage to his heart. Doctors can help, if they are truly caring, and want to get involved with YOU, at a truely caring level. Also, know all your treatment options, new and not so new. I get info from Sloan-kettering, and Mayo all the time. There was one thing that could have helped my husband, but no one knew, or told us about it. Some Doctors don't want to buck the system, but if they really CARE about YOU, they'll help anyway they can. Take care and let me know if you need to talk.

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