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follicular stage4

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

Hi, I was dx 2 days ago with stage4 follicular lymphoma, following a lymphnode biopsy in my left armpit and then ct scans and a bone marrow. The bone marrow revealed that it is in my bones,about 15%. I was given the choice of using "Bexxar" as treatment vs. conventional therapy. Has anyone here had this therapy or have any info or comments? Is the "wacthful waiting" worth concidering? I have no other symptoms other than swollen nodes. I would really like to compare notes with someone. Thanks

JACINDA
Posts: 6
Joined: Jan 2008

Hi my name is Jacinda,
I also have follicular stage 4 30% bone marrow. DX on Dec 4 2007 started chemo Dec 17
I am currently recieving R-CHOP for treatment. Watch and wait wasn't an option for me because there was so much in my body and my doc didn't think it was a good idea. I'm not sure what the other treatment options are. Yopu should have a 2nd opinion always.
please keep me posted

grosie
Posts: 5
Joined: Jan 2005

Hi Donald:
I was dx with NHL follicular small Bcell lymphoma stage 4 three and a half years ago and have been in a wachful waiting mode all these years. To me it's worth it since my oncologist tells me the side effects from the treatments are worse than the lymphoma itself. Since my B cell is small it is very slow growing, there for no treatment is needed at this time. Although, I must say living with the cancer and have nothing done about it gets very emotional at times. In the beginning my reaction was, lets nip it in the bud, I went for a second opinion and got the same answer, "watchful waiting" was the way to go. You must do what you feel is best for you Donald, as long as you feel confortable with your oncologist that's very important. Make sure you have support because you will have days when you'll need to talk to someone. Keep us posted on how you are doing Donald.
Good luck to you and God Bless
Grosie

noreaster
Posts: 4
Joined: Dec 2007

Hi Donald,

Back in Aug of 2000 I was diagnosed with indolent lymphoma after all the procedures you also went through. It was found during a routine physical when my white blood counts were consistently on the high side. No other symptoms. I was advised to go the watch and wait route which I did until a little over a year ago. It finally transformed into a more aggressive diffuse large B cell lymphoma. I went through the R-CHOP chemo then was advised to also do a autologous stem cell transplant, which I did. Started the process the beginning of last year and was back to work full time by Dec 1st.

My advice to you is to make sure to get a 2nd opinion. It's just a good idea. Then doing as much research as you feel comfortable doing and make the decision that's right for you. All we heard throughout the whole process is that everyone is different and it's true. I don't know what the "Bexxar" treatment is so I can't help you there. Best of luck to you.

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

Thanks to everyone that has replied to my message. I've gained a lot of encouragement and needed comfort in reading your stories. In the last week I realized that when I went to hear the results of my CT Scan and marrow aspiration I wasn't real comprehensive or inquisative upon hearing what the Dr. was saying past the intial dx.. I could barely recall the things I heard my wife asking. So I scheduled another appt. with him and during the days prior to seeing him again I put together a list of questions that I wanted to ask. It was well worth it to discuss all the issues while not under the shock and stress of hearing the results. I will still go to Birmingham in March for my second opinion and to see wether I can qualify for a clinical trial to use Bexxar or Zevelin,depending on what I can find out about the proceedures most up to date statistics and successes when I go. As far as the issue of "watchful waiting" goes, I don't thimk I will do that. Can't see leaving something that is unwelcomed.
I will keep you informed and I look forward to your replies in the future.

Djhodan's picture
Djhodan
Posts: 5
Joined: May 2008

Donald i just got Bexxar on Friday..I have been clean for 16 years with follicular non hodgkins i have the small and medium cell..I had a clean bone marrow so i got this..I went through the chop 16 years ago and it was bad...This is my third time to have this...With Bexxar i got a sample dose and then the big one..I feel fine except i am tried...Would like to hear from you if you did Bexxar or not..Good Luck Debbie

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

Hi Debbie! Today is the first time I have have been here at CSN for a while. I started recieving my treatment of Rituxin, once a week through an IV for six weeks. Then I got a tracer amount of Zevelin following the 5th wk Rituxin to verify a good dispursement throughout my body. The next week(June 10) I got the full dose of Zevalin after my 6th and final Rituxin infussion. As of now I think that this type of treatment is the way to go. I haven't had any adverse affects from the treatments at all. It was expected that my WBC and Platelets would drop down to a real low amount between the 4th and 6th week following the Zevalin. My counts started dropping at wk 4 and now it is week the start of week six. I felt a bit tired and light headed for a couple of days during the past week but now I feel great. I go later today to get my blood drawn again and I hope to see that my counts are now going back up.
Because Bexxar and Zevalin are so mush alike I would think that maybe your white blood cell count is low? I am sure you have found out the reason by now and hope to hear more from you. I have been looking for a long time for someone that had the same type of treatment as I. I saw my Dr. back on the 8th of July and he said he couln't feel any enlarged nodes and shceduled me for a ct scan in August to see if its gone.
Be strong and positive always! Don

Djhodan's picture
Djhodan
Posts: 5
Joined: May 2008

Well i have not been on here for a while and just read where you are CLEAN yea...I go next week to see if i am or not...I pray alot and hope it's working...I still get a little tired but i will get ok...I tell you what Bexxar is alot easier than the CHOP i got 15 year's ago..I made me so sick i hope i never have that again...Good Luck to you and hope this is your final answer and it never show's up again...Debbie

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

Thank you! It's a GREAT feeling and a gift from God. Like you, I think zevalin and bexxar are very promising new treatment options. Is the tired feeling an effect from the bexxar? It's good to be positive as you are and I'm sure everything will work for you. We will both live CLEAN for many years. Let us know the results of your upcoming report. Enjoy your Holidays

Don

Ckaisor
Posts: 2
Joined: Jun 2009

Hi, I am new to this message board and I am still not sure how to get around or how I got here. I was wondering how you are doing? my mom was diagnosed back in 1997 with non hodgkins lymphoma and she had radiation only and was on wait and watch until 2006 when it started to grow again. She then had Rituxan and then CVP-R and it didn't help. The doctor is thinking Zevalin next. I am just looking for people who may have been though this and can let me know what the treatment is like and what to expect. My mom is a lot older. She is 73 and has had quadrulple coronary by-pass (2006) and has kidney issues also.

Thanks for your time.

Cindy

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

Hi Cindy,
I am sorry to hear about your mothers relapse and I hope that you can find the answers you seek.
I myself am doing great. Praise God! Yes I am a bit younger than your mom and without additional medical problems. My zevalin treatment was my first line of defense and it has worked quite well. I never had any adverse side effects!
It is administered at first as a tracer (a small trace amount) to see if it attaches to the cancer cells. Then a hot dose is injected into a small IV solution. You can find out more by going to the zevalin.com website.
This may be the treatment for your mom as it was for me. I highly recommend the drug to those that qualify for it.
I wish you and your mother well. Stay strong and positive.

Don

Kristine 9.9.99
Posts: 4
Joined: May 2009

Hi Donald 51~

How are you doing now? I just joined this week. I was diagnosed with stage 4 follicular lymphoma almost 10 years ago (9-9-99). I didn't start any treatment until 2002 (CVP). We did a lot of waiting (drove me nuts sometimes). But, I would definitely get a 2nd opinion! My doctor didn't want me to do Bexxar. My nodes started getting bigger again last summer and I started Rituxan in August. Its working fine. Have you looked at any of the clinical trials that are out there?

~K

lees1953
Posts: 20
Joined: Sep 2009

I was diagnosed in April Stage IV due to bone marrow; two scans late my nodes show
moderate growth each scan. I go back Oct 5 as Dr says he will leave it up to me if I want to start Rituxin; I was asymptomatic in April, now I am extremely fatigued, hot all the time, scalp itching...
How big were your nodes when first found? How big when they/you decided to do treatment?
Most of my largest ones are in my abdomen deep so I don't feel them, as well as a malignant tumor on the aorta at bifurcation. It measures 1" by 1.5"
I am in a quandry as to what decision to make, thanks, Sheila

master_quan
Posts: 1
Joined: Jul 2011

Same treatment is used for any stage now. Newer medicine is good, if you need it again I recommend Treanda, and Rituxan. I am in stage 2 right now, and waiting for my bone marrow results to see if I am in stage 4. Either way I still will be put on these 2 products. I just have to do them longer if in stage 4. Treatment has come a long way now. Once a month 2 days, 6 months for stage 2, and 8 months for stage 4. Two more years of Rituxan once every 3 months. Till they give me the clean bill of health. Makes me tired but not really sick like the all others have said. 80% body health for 3 days and 100% feel good till the next treatment, so far. Check with your OD to see what they are putting you on. This just got released earlier this last year and is being used much more so starting now, less side effects and better results.

Kristine 9.9.99
Posts: 4
Joined: May 2009

Sorry...should have kept reading all of the posts.

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

Hi Donald

I have been wondering about you. Does that mean after the Zevalin this.
I dont know if I could do another. I do my cat scan in August. And have been sweating again. Just have also been very tired and in general not feeling the best.
I am truly surprised to hear this.
You can put this in remission again,
Let me know how you do Donald.
Hilde

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

Hilde,
I was wondering if you were responding to Donald because I do not see a response on my computer from him. John

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

You know what chemo brain is? LOL I read the post and thought it was recent till after I posted. All I did was read it and think " oh my gosh I did Zevalin and thought he relapsed. Oh well that is when you get old and have chemo brain with it.
I have wondered how Donald51 is doing. I suppose I always look to see how others are doing some years after they did Zevalin.
Hope you are doing well John. Thank you for pointing this out.
Hilde

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