NH (Large and Small B Cell) Lymphoma of the Bone Marrow

betharant
betharant Member Posts: 5
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
My cancer began in the bone marrow of my hips as small B cell nonhodgkins lymphoma. I was 39. By the time they found it and 6 months later diagnosed it, some of the cancer cells had transformed to large b cell and had spread to various bones all over my body. I've had spinal fusion with cadaver bone, 4 open bone biopsies, and a collapsed femur which was repaired with various rods, screws, plates, etc. I've had 8 rounds of CHOP and Rituxin as well as 13 treatments of Zometa (to regenerate bones)and have been in remission for 23 months. I'm wondering if anyone else has this type of cancer and if so, how long you've remained in remission. My doctor is very optimistic but I have to wonder if he's being realistic or if he's prescribing rose colored glasses for me. I like to be realistic. The initial shock was tough and I wish to avoid that again by trying to be realistic but optimistic at the same time (if that's possible.) God bless you all and I pray that He gives you the kind of peace He has given me - truly a peace that surpasses all understanding.

Comments

  • patlivin
    patlivin Member Posts: 1
    #2
    Hi betharant,
    It sounds like you've been through alot! I was diagnosed in 1998 with follicular indolent B cell NHL. I've had CVP (Same as CHOP without the adriamycin), Rituxan (6 times), Fludarabine (1 course) and I just finished Rituxan followed by 4 treatments of Cytoxin with Pentostatin. This time the tumor in my abdomen didn't shrink and I'm having the same symptoms as I did before I started treatment. This Wens I'm going to see a NHL specialist at the Siteman Cancer center here in St. Louis, Nacy Bartlett. Right now I am at wits end! I'm 55 years old and survived 6 years since diagnosis but I'm getting tired of chemo and treatments and it now appears my tumors aren't responding to standard chemo and Rituxan. I've always tried to stay positive but from everything I read I'm beginning to believe I'm on my last legs. I have a lovely wife of 23 years and a fantastic 20 year old son. The thought of doing more agressive chemos or of being on chemo if I'm going to die soon anyway is not a cheery thought! I don't mean to sound negative but this NHL has suddenly beaten me down emotionally. Thanks for listening.
    patlivin
  • Unknown
    Unknown
    #3
    Beth,
    Just came back from a bone density test. Funny you mention that. I still due Zometa. Remission for about the same time. Diagnosed : NHL B cell 06/2001 , 8 rounds CHOP with Rituxan as well. Lost 4 inches in height from compression in my back. Cant answer your question ..except know that you are not alone. This disease does not disciminate.. I was competing in olympic length triatalons prior to this set back. I also have another disease that I will never be cured of. It can however be dealt with contignent on the daily maint of my spiritual condition, One day at a time. .... But then again we are STILL THE FORTUNATE ONES .... just lost a good Motorcycling friend of mine from this disease. ..... Love ya ....... keep the faith.....
  • betharant
    betharant Member Posts: 5
    #4
    patlivin said:

    Hi betharant,
    It sounds like you've been through alot! I was diagnosed in 1998 with follicular indolent B cell NHL. I've had CVP (Same as CHOP without the adriamycin), Rituxan (6 times), Fludarabine (1 course) and I just finished Rituxan followed by 4 treatments of Cytoxin with Pentostatin. This time the tumor in my abdomen didn't shrink and I'm having the same symptoms as I did before I started treatment. This Wens I'm going to see a NHL specialist at the Siteman Cancer center here in St. Louis, Nacy Bartlett. Right now I am at wits end! I'm 55 years old and survived 6 years since diagnosis but I'm getting tired of chemo and treatments and it now appears my tumors aren't responding to standard chemo and Rituxan. I've always tried to stay positive but from everything I read I'm beginning to believe I'm on my last legs. I have a lovely wife of 23 years and a fantastic 20 year old son. The thought of doing more agressive chemos or of being on chemo if I'm going to die soon anyway is not a cheery thought! I don't mean to sound negative but this NHL has suddenly beaten me down emotionally. Thanks for listening.
    patlivin

    I understand how you feel. I would be sure I have thoroughly researched all of my options before making any harsh decisions. I'm sure you will. I have 14 and 16 year old sons as well as a husband (my soul mate)of 18 years. My fourteen year old has epilepsy, Asperger's Syndrome, Juvenile Rheumatoid Arthritis and learning disabilities. I have to live for him more than anything. I'm a certified teacher and am home schooling him. I'll keep fighting until the day I die. I do believe though, if they told me there was nothing else they could do, I would say enough is enough. That chemo is tough. I'm having to live on oxycontin and hydrocodone due to the pain from the bone lesions left by the cancer. I am not fearful of dying because I know without a doubt that Jesus has my back. I just want to make as much of a positive impact on my boys as is possible before I go. Hopefully I'll live to be a tough old broad! Let me know how you are doing. I'm a good listener. God bless you. Feel free to e-mail me. barant4263@comporium.net
  • betharant
    betharant Member Posts: 5
    #5
    unknown said:

    Beth,
    Just came back from a bone density test. Funny you mention that. I still due Zometa. Remission for about the same time. Diagnosed : NHL B cell 06/2001 , 8 rounds CHOP with Rituxan as well. Lost 4 inches in height from compression in my back. Cant answer your question ..except know that you are not alone. This disease does not disciminate.. I was competing in olympic length triatalons prior to this set back. I also have another disease that I will never be cured of. It can however be dealt with contignent on the daily maint of my spiritual condition, One day at a time. .... But then again we are STILL THE FORTUNATE ONES .... just lost a good Motorcycling friend of mine from this disease. ..... Love ya ....... keep the faith.....

    Being nosey. What other disease do you have?
  • JackFTL
    JackFTL Member Posts: 3
    #6
    I had NHL in 1993, first in my abdominal lymph nodes, which then spread to the bone marrow in my femurs. It was diagnosed as stage IVb, large B-cell. I was treated with CHOP. I had B-cell lymphoma again in 2000, but it was a second primary lymphoma, rather than a relapse of the first. Both were treated successfully, and I'm doing fine now. So yes, it can be done.
  • chicagolaw
    chicagolaw Member Posts: 5
    #7
    patlivin said:

    Hi betharant,
    It sounds like you've been through alot! I was diagnosed in 1998 with follicular indolent B cell NHL. I've had CVP (Same as CHOP without the adriamycin), Rituxan (6 times), Fludarabine (1 course) and I just finished Rituxan followed by 4 treatments of Cytoxin with Pentostatin. This time the tumor in my abdomen didn't shrink and I'm having the same symptoms as I did before I started treatment. This Wens I'm going to see a NHL specialist at the Siteman Cancer center here in St. Louis, Nacy Bartlett. Right now I am at wits end! I'm 55 years old and survived 6 years since diagnosis but I'm getting tired of chemo and treatments and it now appears my tumors aren't responding to standard chemo and Rituxan. I've always tried to stay positive but from everything I read I'm beginning to believe I'm on my last legs. I have a lovely wife of 23 years and a fantastic 20 year old son. The thought of doing more agressive chemos or of being on chemo if I'm going to die soon anyway is not a cheery thought! I don't mean to sound negative but this NHL has suddenly beaten me down emotionally. Thanks for listening.
    patlivin

    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 treatment. My nodes grew very slowly until last fall when I notice a significant amount of growth, particularly 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 trouble buttoning my shirt collar and suggested that I would need chemo soon.

    Instead, I decided to try a high pH protocol and made a complete change to my diet, eating only foods that are nutritionally valuable. I started this 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 therapy 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 aggressively. Her MD recommended she immediately 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 completely negative.

    You should also consider diet. MD's are generally completely in the dark when it comes to nutrition. A good place to start understanding cancer and nutrition is a book now in the stores: Super Foods Rx by Stephen Pratt, MD. I was a hamburger-fries-coke guy until I read this book. There are many other excellent books on nutrition.

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

    Don Engel
    312-229-7900

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