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newbie to this type of cancer

vinny59's picture
vinny59
Posts: 1032
Joined: Nov 2006

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!!!!!!!

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

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's picture
vinny59
Posts: 1032
Joined: Nov 2006

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's picture
COBRA666
Posts: 2413
Joined: May 2010

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's picture
vinny59
Posts: 1032
Joined: Nov 2006

thanks

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

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's picture
vinny59
Posts: 1032
Joined: Nov 2006

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's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

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

vinny59's picture
vinny59
Posts: 1032
Joined: Nov 2006

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's picture
merrywinner
Posts: 627
Joined: Aug 2009

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's picture
vinny59
Posts: 1032
Joined: Nov 2006

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

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

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's picture
vinny59
Posts: 1032
Joined: Nov 2006

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?

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