newbie to this type of cancer

vinny59
vinny59 Member Posts: 1,036 Member
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hi, I've been a member here since 2006, I had Head and Neck cancer which I had been in remission for about 3 1/2 years, just about three weeks ago everything changed, it was dumb luck that I was feeling dizzy and my Onocologist suggested I have a P.E.T. scan, I'm thinking a heart problem, turns out the scan found several hot spot's, a bone scan affirmed the P.E.T. scans findings. I had a needle biopsy of the bone in the L5, and it came back positive for Stage 4 Non-Hodgins lymphoma, diffuse large B cell type.Monday I have a spinal tap scheduled, hopefully it will be negative and I can start my treatment of Chemo Wednesday.I will be recieving eight sessions of Chemo consisting of Rituxan,Vincristine,Adriamycin.I been through this once before but not this type of treatment, any comments would be greatly appreciated. Sorry for the long post!!!!!!!

Comments

  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #2
    NEWBIE
    What kind of treatment did you have for your head and neck cancer? What exactly was the diagnoses in those areas? Was it lymphoma at those sites as well? Hopefully I can fill you in a little since I have lymphoma myself. John
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #3
    COBRA666 said:

    NEWBIE
    What kind of treatment did you have for your head and neck cancer? What exactly was the diagnoses in those areas? Was it lymphoma at those sites as well? Hopefully I can fill you in a little since I have lymphoma myself. John

    new type
    Hey John, this is a totally different cancer then my Head and Neck, that cancer was squamous cell carcinoma, it was a egg shape tumor that developed in my neck, it never spread anywhere else. I went through nine weeks of radiation and chemo, I was in the hospital every other week which was hard, with the new treatment it seems that it's done all in one day every other two weeks......... hope this helps
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #4
    vinny59 said:

    new type
    Hey John, this is a totally different cancer then my Head and Neck, that cancer was squamous cell carcinoma, it was a egg shape tumor that developed in my neck, it never spread anywhere else. I went through nine weeks of radiation and chemo, I was in the hospital every other week which was hard, with the new treatment it seems that it's done all in one day every other two weeks......... hope this helps

    new type
    Vinny, yes it is totally different. Lymphoma is a disease of the lymph nodes. It can spread to other lymph nodes and to the bones, but it is still lymphoma cells. If it gets to the bone marrow it is not bone cancer it is lymphoma. It can spread to the organs as well, but it is still lymphoma.An example would be if it spread to your intestine it is not intestinal cancer, it is still lymphoma. If it is stage 4 then the chemo is used. It attacks all the cancerous lymphoma cells in the body. They usually use r-chop or r-cvp, depending on the Dr. I am getting 6 treatments of the r-chop therapy and hoping to put it in remission.I have the indolent type stage 4 which is very slow growing. You have the Large b-cell which is aggressive,but that is also very treatable.I know this is a very scary time for you, but hang in there and see what they come up with for a treatment plan. John
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #5
    COBRA666 said:

    new type
    Vinny, yes it is totally different. Lymphoma is a disease of the lymph nodes. It can spread to other lymph nodes and to the bones, but it is still lymphoma cells. If it gets to the bone marrow it is not bone cancer it is lymphoma. It can spread to the organs as well, but it is still lymphoma.An example would be if it spread to your intestine it is not intestinal cancer, it is still lymphoma. If it is stage 4 then the chemo is used. It attacks all the cancerous lymphoma cells in the body. They usually use r-chop or r-cvp, depending on the Dr. I am getting 6 treatments of the r-chop therapy and hoping to put it in remission.I have the indolent type stage 4 which is very slow growing. You have the Large b-cell which is aggressive,but that is also very treatable.I know this is a very scary time for you, but hang in there and see what they come up with for a treatment plan. John

    new type
    thanks
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    #6
    vinny59 said:

    new type
    thanks

    New type
    Sorry to hear your back again Vinny, but lymphoma is treatable and hopefully this chemo will be easier on you. Glad they found it though!

    Rituxan is easiest and hopefully you'll have no trouble with that, however Vincristine is a horrible drug. I had severe jaw pain for a few days that made eating, drinking, and crying very very painful, and it did cause some neuropathy which was frustrating and at times caused me to feel very unsteady on my legs. It didn't last too awfully long after chemo finished and everything did get back to normal.

    I didn't have the adriamycin so I can't relate to that portion. The cytoxan wasn't great either, but again I've heard this type of chemo is very easy compared to others. Based on your head and neck treatment, this will probably be a cake walk for you.

    Hang in there, and good luck to you!

    Beth
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #7
    dixiegirl said:

    New type
    Sorry to hear your back again Vinny, but lymphoma is treatable and hopefully this chemo will be easier on you. Glad they found it though!

    Rituxan is easiest and hopefully you'll have no trouble with that, however Vincristine is a horrible drug. I had severe jaw pain for a few days that made eating, drinking, and crying very very painful, and it did cause some neuropathy which was frustrating and at times caused me to feel very unsteady on my legs. It didn't last too awfully long after chemo finished and everything did get back to normal.

    I didn't have the adriamycin so I can't relate to that portion. The cytoxan wasn't great either, but again I've heard this type of chemo is very easy compared to others. Based on your head and neck treatment, this will probably be a cake walk for you.

    Hang in there, and good luck to you!

    Beth

    new type
    hey Beth thanks for the info, my oncologist told me that this treatment is ten times worst then what I went through before, I guess I will have to wait and see the outcome I kinda like yours better!!!! hahahahaha
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    #8
    vinny59 said:

    new type
    hey Beth thanks for the info, my oncologist told me that this treatment is ten times worst then what I went through before, I guess I will have to wait and see the outcome I kinda like yours better!!!! hahahahaha

    Always hopeful
    Vinny,

    I sincerely hope it goes better than what your doc said. What did you do before for the h&n? I know no treatment is easy, but this is doable. A friend of mine did rchop and did great, no real side effects other than hair loss and fatigue.

    Naps are a wonderful thing and I still enjoy them every weekend! Good luck to you my friend!

    Beth
  • merrywinner
    merrywinner Member Posts: 626 Member
    #9
    R CHOP almost
    Your treatment sounds very close to the treatment called R CHOP which is a cocktail including Rituxan, vincristine, Adriamycin cytoxan and prednisone. Widely used these days for NHL. In my case I had follicular NHL grade 1 stage 4A with 50% bone marrow involvement. I received 6 cycles, 1 every 3 weeks from Oct. 2009 thru Jan. 2010. I went into remission as verified by a PET scan just prior to treatment 3 but had to complete all 6. Today I am in complete remission including the bone marrow. Very effective treatment for me and although it has it's moments it can be done. If I can be of any help please just ask and good luck to you. Mary
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #10
    merrywinner said:

    R CHOP almost
    Your treatment sounds very close to the treatment called R CHOP which is a cocktail including Rituxan, vincristine, Adriamycin cytoxan and prednisone. Widely used these days for NHL. In my case I had follicular NHL grade 1 stage 4A with 50% bone marrow involvement. I received 6 cycles, 1 every 3 weeks from Oct. 2009 thru Jan. 2010. I went into remission as verified by a PET scan just prior to treatment 3 but had to complete all 6. Today I am in complete remission including the bone marrow. Very effective treatment for me and although it has it's moments it can be done. If I can be of any help please just ask and good luck to you. Mary

    thank you Mary, I had a
    thank you Mary, I had a spinal tap done this morning waiting on the results of that,did you work at all during treatment?????
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #11
    dixiegirl said:

    Always hopeful
    Vinny,

    I sincerely hope it goes better than what your doc said. What did you do before for the h&n? I know no treatment is easy, but this is doable. A friend of mine did rchop and did great, no real side effects other than hair loss and fatigue.

    Naps are a wonderful thing and I still enjoy them every weekend! Good luck to you my friend!

    Beth

    naps
    hahahaha nap's are great,with my H&N treatment I got so sick, could not stop throwing up, I lost about 30 lbs. but I did get through it......
  • merrywinner
    merrywinner Member Posts: 626 Member
    #12
    vinny59 said:

    thank you Mary, I had a
    thank you Mary, I had a spinal tap done this morning waiting on the results of that,did you work at all during treatment?????

    Hi Vinny
    Yes I was able to work some but not my full schedule. The treatment as you probably know is in 3 week cycles. Usually that first week of each cycle I was pretty wiped out mostly with fatigue and it just seemed that my body could not get enough rest. But usually by the second and third weeks it was gradually better and I made it to work fairly well. I think part of the problem for me was that the blood counts take a hit and because I am a nurse if my white count was on the low side it was not in my best interest to be around sick people. So I probably missed more then average because of that. I was receiving treatment during the H1N1 thing. I had FMLA leave so my job was protected and I could take off as needed. Why the spinal tap? Mary
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #13
    merrywinner said:

    Hi Vinny
    Yes I was able to work some but not my full schedule. The treatment as you probably know is in 3 week cycles. Usually that first week of each cycle I was pretty wiped out mostly with fatigue and it just seemed that my body could not get enough rest. But usually by the second and third weeks it was gradually better and I made it to work fairly well. I think part of the problem for me was that the blood counts take a hit and because I am a nurse if my white count was on the low side it was not in my best interest to be around sick people. So I probably missed more then average because of that. I was receiving treatment during the H1N1 thing. I had FMLA leave so my job was protected and I could take off as needed. Why the spinal tap? Mary

    spinal tap
    My oncologist order it to rule out cancer in my spinal fluid, which would not be a good thing because your spinal fluid travels straight to the brain. I have NHL in two areas of the spine, in addition to three other areas. I'm always around people in my job, not as severe as yours. I guess I will play it by ear.... thanks so much for the input Mary..... Oh and I have a two week lay off time, I wonder why?

Discussion Boards