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Non-Hodgkins Follicullar Lymphoma Stage 4

hilde451's picture
hilde451
Posts: 229
Joined: Oct 2009

I have just found this support group. I have been diagnosed in O4. Had surgery on my neck and inside my left cheek.
Did 20 Radiation Treatments. Then was in remission till almost 5 years. One more week would have been 5 years.
Now I am on Treatment #8 coming up for Stage 4 Follicular non-hodgkins lymphoma.
My Oncologist talked about Zevalin and Rituxin so I dont know what his plans are.
I have to get all my tests done the next time. My bone marrow is involved.
My question is about the Zevalin. I just dont know what to ask. I do have other
side effects from the chemo. But trying to deal with all of it. I am 64 years young.
Hope to hear from some of you. I wish you all well.

DennisR
Posts: 148
Joined: Sep 2009

Hi Hilde,
I was DXd with Stage 4 NHL in 2000 at age 60, had surgery and Chemo and was in remission, or cured, for nearly 8 years when I had a recurrance, I had Chemo for 6 months which got rid of the Stage 2 tumor, followed by a Bone Marrow/Stem Cell Transplant which hoepfully found and killed the rogue cells in my Marrow. You might want to talk to your Oncologist about a BMT though I'm not clear from your post whether your 2nd DX is the same cancer as your 1st 5 years ago.
I'm not familiar with the Zevalin drug, but sometimes the various drugs are manufactured under different names, but are the same drug with perhaps an anti nausea ingredient added to make them less prone to some side effects. My 2nd round of Chemo was an entirely different and very potent cocktail of drugs, none of which I recognized by name. I guess I should get out my paperwork describing the various drugs and side effects I had the 2nd time. Something I've just put in a drawer and avoided even looking at, just the memories (nightmares), of the 24/7 treatments and side effects were enough to last me for awhile.
DennisR

Gaz's picture
Gaz
Posts: 22
Joined: Oct 2008

Hilde, I am 53 and was diagnosed in February 2007 with stage 4. I had ignored so many warnings...high temps, nausea, pain, etc. The cancer had spread to my lungs, liver, spleen stomach and lymph nodes. I am still clear and recently ran the Denver Half Marathon (although slowly). The statistics don't favor me (I hear you Dennis) but I believe that I will live to fight another day. To me, there is no other altenative. Stay positive and fight. Believe and trust in your support group. My wife and daughter are both RNs and they are why I am still here today along with faith and friends. My thoughts and prayers are with you.

alleycat42's picture
alleycat42
Posts: 16
Joined: Aug 2009

i dont read much good about zevalin, its a pretty new drug. i would suggest you check out these sites before you commit to anything.

http://injury-law.freeadvice.com/drug-toxic_chemicals/zevalin_side_effects_risks.htm

http://www.zevalin.com/

hope thia is some help. good luck.

donald51's picture
donald51
Posts: 62
Joined: Feb 2008

Hi Hilde,
I am sorry to hear of your need for continued tx. I was dx. with stage 4 follicular nhl with 15% BMI in Jan. '08. Got my 2nd opinion from an onc with a large university cancer clinic that could also provide me with the treatment that I wanted. Zevalin or Bexxar. I leaned more towards the zevalin and so the doctor.
My zevalin tx was administered in June '08 and I was in remission by August without any adverse effects such as weight loss, getting sick or loosing hair. I am a BIG advocate for new cancer treatments available to us. I am still NED(No Evidence of Disease)according to my last ct scan. I do go for "maintenance therapy" every two months. This therapy consists of an infusion of the drug named Rituxan. It takes about 2 hours and off I go. This procedure will continue for 2-5 years. I am a bit younger than you (53 now) and no other medical issues so I tolerated the procedure well. I have had some contact with a couple of older recips and they were doing ok at the time.
I hope you are well. Stay strong and positive.

pjcinnc
Posts: 3
Joined: Nov 2009

I just joined here and about the first thing I saw was this blog with you all that have the same thing I do. I was just dx on 9/2/09. I have a couple small nodes affected in my chest but mine is mostly in my bone marrow. I just finished 4 treatments of Rituxan. I go back to the dr in a couple weeks then next month I have to have another BMB. I hate those but he says that is only way he can tell if it is working for me because so much of it is in my bone marrow. I am tring to be positive and not think the worst. I have been mighty tired. have you all been tired during all this? it is good to hear of long remissions. I hope I can get this monster in remission.

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