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Zevalin and Non-Hodgkins Lymphoma

hilde451's picture
hilde451
Posts: 223
Joined: Oct 2009

Hi Don:

Just wanted to tell you that I went through with it. Last Wednesday 12/23 I had the infusion.
So I seemed to do pretty well so far so good. I suppose I start with the blood count this week.
Hopefully it will go ok
I guess we will see how I come out.
Hope you and your wife had a wonderful Christmas. Thank you for your encouragement.
I have questions on this but still really dont know what I really would like to know.
Hilde

donald51's picture
donald51
Posts: 59
Joined: Feb 2008

Hi Hildi,

Hooray for you! I am glad to hear from you. We have been wondering how you were doing? I’m sure you will do just fine and your outcome will be just what you want. Oatmeal! In your last reply you asked what to eat for breakfast? I do try to avoid as many processed foods as possible though.
We had a real nice Christmas day and we hope that you and yours did as well. Anytime I can be of any help, you just ask. If you would like I will give you my email address so we can talk off the forum.
Don

hilde451's picture
hilde451
Posts: 223
Joined: Oct 2009

Hello Don:

Thankyou so very much and I am so glad that you and your family had a wonderful Christmas. My Fiance's son came to town and brought his girlfriend. So we all got together and had a wonderful time.
I suppose now I just wait while they set up my blood draws. So see what happens. I did go to visit my Mom today for a short time. But when my blood levels drop I will not go and my siblings will have to do it.
My e-mail is hhildeschf@aol.com.
It is good to have someone that has been through this. I really will tell you I was plenty scared. How often do you go for scans?
You still have to do those dont you?
I have been eating cheerios. Trying to do the lower sugar ones.
Oatmeal sounds good. Hope you are feeling well.
God Bless you and your family.
Hilde

711tom
Posts: 44
Joined: Mar 2010

I am thinking of doing Zevalin this summer and have mixed emotions about it. How are you doing as of April? What was your dx? I have FNHL stage 4 dx in 1993. I have had three rounds of chemo over the years which my onc says may be ****cerning doing the Zevalin. he is recommending a sct but I feel drawn to Zevalin. I hope you are well and jsut ask if you could shed some light on your experience with it.

hilde451's picture
hilde451
Posts: 223
Joined: Oct 2009

Hello Tom:

I was diagnosed with Non-Hodgkins lymphoma in 04, at which time I had surgery to get the gland taken out of my left neck and my left cheek. Then it was said that is what it was. I had 20 radiation treatments. I was home free for almost 5 years. Then I noticed a swelling on my right cheek. So more surgeries, Then that came back positive. So then I had a bone marrow biobsy. It turns out that it is in my bone marrow.
And I am stage 4. So did 8 treatments of R-Chop. And then two Rituxin treatments and then Zevalin December 23rd. It was a hard decision for me also.
But I did it, my blood work went dow really far. But it is going slowly back up. I had a pet scan in February and it turned out really good.
Now I am going to do a cat scan June 2nd and see the Oncologist June 9th.
So will see how that turns out. I have some muscle problems other then that I am doing ok. Have some days I dont feel the best. But it takes time. Hope you decide what is best for you. I wish you all the best. Hilde

yogi1955
Posts: 3
Joined: Apr 2010

Tom,

I was diagnosed with Stage 4 NHL in August 2006 and have been through the entire cycle, including RCVP, RCHOP, Velcade and Treanda. I will be getting my Zevalin treatments starting next Tuesday, have you heard anything from other patients?

I don't have any information other than what I have read on the web, so I would be very interested in any information you and your wife have found.

Take care.

711tom
Posts: 44
Joined: Mar 2010

Yogi, read through some of the older threads as there is a lot of first hand experience coming from these wonderful people regarding Zevalin and quite frankly all kinds of treatments. Stay strong as hard as it is and fight the fight!

britta
Posts: 107
Joined: Apr 2010

Hi,

Read you were getting the Zevalin a few weeks ago, how is that going? There are a number of people on here right now that have had the Zevalin in the last few months. It seems to be the new treatment for folliculear Lymphoma. I, too, will probably be having it in early July. I just finished R-CVP after I was diagnosed with Stage 4, grade 1. I'm a little apprehensive because of the low blood counts, but it seems now all we can do is suck it up and take the treatment. Actually, from what I have read, we are very blessed to even be offered the Zevalin. It is not available through all onc.

I pray you are doing well, keep us updated. We all care.

Britta

711tom
Posts: 44
Joined: Mar 2010

Good luck on 6/2! you will be in my prayers. If this is not to personal what was it like when your counts were really low? Could you do anything? Could you work? Did you stay away from all possible exposures? How long does it last? I read that the median dangerous time is 13 days but the threads I have read seem a lot longer. My onc is very concerned about that with me as he states due to the erosion of my BM over the years. I had CHOP in 1993; Had a long durable remission. R-Treanda in 2005 and CVP-R in 2008. He is concernewd that if my counts do not come back up then there is nothing there to do the SCT with. My thought is freeze it first then try Zevalin, if I fail then do the sct. Anyone ever heard of that? He has me waiting now as nothing (tunors) are in a dangerous place and the growth is slow, but I am a wreck making the decision. I really don't know the BM involvement anymore as I have not had a biopsy since 05. I guess that alone could determine my course. Also, do you think they would do chemo first to shrink the tumors prior to Zevalin? It seems everyone on here did the Zevalin after treatment. Thanks for your and everyone's help here, it's good to have this venue.

hilde451's picture
hilde451
Posts: 223
Joined: Oct 2009

Hello Tom!

I had my treatment first. Then the Zevalin. You see it was in my bone marrow. And it can not be more then 25% or you can not have Zevalin.
Yes you would have to have treatment first.
I am still somewhat concerned about my blood tests. I have not had one since two months now. So will get a cbc June 9th when I see my Oncologist. Yes I did stay away from things and took a strong antibiotic for two month. They do 12 weeks of weekly cbc draws. Mine got really very low.
I am still tired. I am a housewife so thank the Lord I did not have to deal with working.
I dont think I could have had the energy to do it.
But it will come back. Let me know what you decide to do.
I wish you all the best. Hope you have a good week.
Hilde

711tom
Posts: 44
Joined: Mar 2010

Thanks for the info and you are in my prayers for the visit on the 9th. I know it will be good! My last biopsy showed less than 15% involvement but that was a year ago. I have heard that while counts go low the drug really works wonders but I am a bit concerned that my onc showed some hesitation. You know when I went through CHOP and CVP, my counts never really drifted much,really minamal fatigue or drop in white counts, but now I am 52 and it is a bit more concerning. Hang in there as it sounds as you are coming out on the good side now and thank you!

donald51's picture
donald51
Posts: 59
Joined: Feb 2008

Hello Tom,
I was reading a few of your posts and was wondering if you had decided on zevalin or not?
I was dx with indolent fnhl stage 4 in Jan. '08 with 15% bmi. My treatment began with 6 infusions of rituxin (1 per week), then the 7th week was given a small dose of rituxin along with the zevalin dose as a bump. My zevalin treatment was my first and only treatment, it began in May and finished on June 10th and I have been in remission since first ct scan in August '08. I had no troubles during low wbc's by week 5 and they resumed normal levels by the 9th week from receiving the zevalin. Best treatment available, for me and I think for many others as well.

Don

711tom
Posts: 44
Joined: Mar 2010

Actually reading your story and results are pushing me towards the Zevalin. My onc wants me to speak to the head of the BMT dept but that is not scheduled until July. I feel fine and my onc insist that there is no urgency. With that said I am still a little anxious on what to do for my next course and really the unknown of what lies ahead. Thanks for your words and I will stay in touch.

hilde451's picture
hilde451
Posts: 223
Joined: Oct 2009

I did my Zevalin because Don did so well. And he was right about the Zevalin. I just figured I could not loose by doing it. Everything can become a bit rough. But it is all worth a try. I wish you the very best. And let us know how you are doing.
I pray for you and everyone on this board.
Hilde

hilde451's picture
hilde451
Posts: 223
Joined: Oct 2009

Good to see you on the board and glad to see how well you are doing. I hope I get the same results, I do a cat scan june 2nd and see the oncologist on June 9th.
Did you ever have the night sweats before diagnosis? I did and after all the treatments I did pretty well, but lately have got them back again.
Hope this does not mean anything.
I am so happy to see you are doing so well. Do you ever have any tiredness yet?
I suppose I think it all should be gone LOL. No patience.
My prayers are always said for everyone on this board.
Hilde

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