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Had the Zevalin!

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

Hello to all and hope everyone is hanging in there. I had the Zevalin treatment 9 days ago and so far so good. I have to have weekly blood work the first of which was last Tuesday and that was good. Don't feel much except very tired. I would love to hear from others who have had this treatment. It is now being used instead of maintenance Rituxan and most recently been labeled for first line treatment. Keeping my fingers crossed.

711tom
Posts: 44
Joined: Mar 2010

How was the experience? I am considering Zevalin now in stead of doing a sct. I have read a lot of good results and others not so good. Did your doc give you any indication or expectation for results? I am really anxious about it but even more so over a sct. Hope you nstay well and let me know how it goes.

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

So far so good. I completed 6 cycles of R CHOP at the end of January and ended up in complete remission. I had follicular NHL stage 4a, grade 1-2. My MD didn't mention a SCT as an option at this point and I got the feeling it would be used as a last resort. He really felt Zevalin was the way to go at least in my case. Using it for people in remission is somewhat newer and showing excellent results in sustaining remission far longer then Rituxan alone every 3 months. I don't know the exact numbers but I know they are measuring them in years and are close to being able to start using the "cure" word. I sure hope so. I had a dose of Rituxan before the Zevalin and I don't think I noticed much of anything so far. Just the fatigue but I always felt that from Rituxan. I guess the blood counts are the major side effect so they will be checked every week for 12 weeks. Had the first check last Tuesday and Mayo called me all excited because they were so good. I sure hope it stays that way. I know how hard it is to make these decisions, I had a really hard time and received a lot of helpful info on here. Look through the older posts mentioning Zevalin for some of it. Good luck. Mary

britta
Posts: 107
Joined: Apr 2010

Hi Tom,

I'm new here, and also considering the Zevlin. It is scarey to think about after reading some of the comments here and the booklet my doctor gave me. May I ask what a sct is? I'm having to learn all these new terms. I was so afraid for awhile, I haven't done much research, but now will need to make a decision next month. Thanks for your input. I'm so glad I found this site, I really needed someone to talk to.

Britta

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

Hello merrywinner,
It is good to hear you are reacting well to your treatment. It is the way to go as far as I am concerned. Mine was first line defense and never a problem, have felt the same as always. GREAT! Praise God. I pray you experience the same results and that many more can find out about and benifit from this zevalin treatment.
Stay Strong and Positive†

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

Always good to hear from you Donald as you are inspiring. Yes so far so good and I haven't noticed too much...just tired. I also hope that others can be made aware of the treatment. Seems like it's not offered everywhere. But soon I hope. So glad to know you are well and as always appreciate your time and comments. Hilde???
Mary

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

How are you doing ? I am hoping you are still hanging in there. How often do you go to get tested now that you had the Zevalin?
I do a cat scan june 2nd and see the oncologist on June 9th.
Also wondering why my Oncologist did not do rituxin follow up with me.
All these questions. But I still have more going around in my mind.
So will see how it all plays out. Hope you are still doing and feeling well.
Hilde

britta
Posts: 107
Joined: Apr 2010

Merrywinner,

Hi,

I was diagnosed with FNHL in October and started Rituxan infusions in January. My biopsy site wasn't healing, thus the delay. I have one more Rituxan treatment to go and then my doctor at Mayo has also suggested Zevalin. After reading the booklet he gave me, I was very freightened and so now as trying to find out more about it. Last night I think you talked about ordering a book from someone online that was very helpful, but tonight I can't find that website. Could you tell what it was? Also, I will be very interested to see how you are doing. Are you going to Mayo in Rochester? God bless you and stay well, I will be praying for you.

Britta

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

I had to make the decision about doing the Zevalin treatment in March and was so confused and scared but people on this site really helped me. I came across a great site while doing some research that had a wealth of very helpful and positive info. The gal's name is Betsy de Parry and she was a Godsend. All of the info on her website has been vetted so it is accurate. She wrote a book titled The Roller Coaster Chronicles and I did order it and found it very comforting and helpful. In it she tells her personal journey with Lymphoma and its treatment up to and including Zevalin. She even found a posting on this site and talked to me here. Her web address is:www.lymphomabook.com. Shes great and truly interested in helping not just selling books. Yes I am at Mayo in Rochester and feel blessed that I am. How do you like it? As I said so far all is going well. It is early days as I just had the treatment on April 13Th so I hope it continues. A sct is short for stem cell transplant. I hope this helps and my heart and prayers go out to you. Who is your MD? It would be crazy if we have the same one. Good luck. Mary

britta
Posts: 107
Joined: Apr 2010

Hi Mary,

So good to hear from you. I have been thinking about you and praying for you everyday since I read your post, in fact all of you. We are all in this together and with the help of God and each other, we can make it. This site is a Godsend and I am so thankful to have someone to talk to and share info with. I did go to the lymphomabook website, you were right, it has a wealth of information. I am feeling more positive about the Zevalin, but need to pray about it. When I have peace, then I'll know it's the right decision. I'm almost 69, and wonder if age is a factor?

My doctor at Mayo is Dr. Witzig, I actually take my chemo in the twin cities and travel to Mayo for checkups and scans. Made it a little easier this winter not having to worry about driving in a snow storm. Do you have to travel far to Rochester, and do you have to stay there? Stay well, and keep us posted as to how you are feeling. We all care and are praying for you.

I haven't been on the site for several days as I just finished 5th round of R-CVP and the P part (Prednisone) leaves me sleepless, crying and not able to think straight for five days. Today, I'm back to normal and feeling good.

I am wondering about Phil's wife and also Hilde?? Are you out there and how are things going?

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

I'm so glad to see you back and also to know you are doing OK. I am also doing good and to be honest,at least so far,I don't feel anything different after having the Zevalin. I get fatigued easily which I think is to be expected. I also live in the Twin Cities area,just north of Forest Lake. I go to Rochester for everything but usually don't stay down there. It's about 2 and a half hours from here and only had to cancel 1 appt. due to weather last January. My MD is Dr. Nowakowski whom I love but I have heard of DR. Witzig. I am sure you are aware that Dr. Witzig is their Zevalin specialist and has spent years perfecting it's usage. Together with my MD it was under Dr. Witzigs care that I received the Zevalin. Small world! I know how hard it is to make the decision. I think I knew what I needed to do but had to get comfortable with it and that was hard. I wish I could tell you that it worked but of course it is too soon for me to know. I go back for a follow up at the end of May. Just blood work and an office visit. I do have my weekly blood work done at my clinic here. I'm also glad that you found that website helpful. The Prednisone is really difficult and I am glad to be done with that. Thank goodness it was only for 5 days. The Zevalin treatment doesn't involve any Prednisone. I was happy about that. I hope and pray that you continue to do well and do find the peace that you need. Mary

britta
Posts: 107
Joined: Apr 2010

Yes, what a small world that we both live in the north suburbs and both go to Mayo and know of Dr. Witzig. He's a really nice man, very personable and easy to talk to. No, I did not know he was a specialist in Zevalin, but I do remember reading somewhere in my research these last few days that he had conducted studies on Zevalin. He really didn't tell me much about it, just handed me the booklet and explained how it worked. That was right when I was starting chemo, so he maybe didn't want to get too involved in that discussion right then. The information pack from the manufacturer scared the pants off me, but I'm starting too feel better after reading Betsy's website and talking to you.

I don't remember if you mentioned it, but if it's not too personal, when were you diagnosed and what stage was you FNHL? Mine was stage 4, grade 1 but no bone marrow involvement. They said that was unusual for stage 4. Did you ever have chemo brain? I seem to have a hard time concentrating now, the onc here says it's quite common, called it chemo brain!

Stay well, get lots of rest and know we are all praying for a great outcome.

Britta

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

Yes Dr. Witzig is their top gun with the Zevalin. You are lucky to have him. When I had the Zevalin therapy the nurses that took care of me spoke so highly of him and told me he was world renowned for his expertise in this area.
I was diagnosed in July of 2008, so nearing 2 years ago. At diagnosis I was FNHL stage 4A Grade 1-2. I had 50% bone marrow involvement which is high. After finishing the R CHOP my PET scan was clear. I had another Bone Marrow Biopsy prior to the Zevalin therapy which was clear. I have been lucky!!
Yes during the R CHOP I did notice increased difficulty concentrating and feeling foggy and dull. I had heard of Chemo brain and spoke to my MD about it. His opinion was that it is something they hear about and they feel it is partly all the meds combined with the stress of treatment and preoccupation with all of it. He said it would get better. I didn't suffer awfully much with it but would notice subtle things. Then one morning probably 6-8 weeks after finishing the R CHOP I woke up and could just feel that the fog had lifted. My world looked sharper and concentrating was back to what it had been. It was a great feeling. I no longer have to make lists to tell me to look at my lists. lol. I don't feel that same thing with the Zevalin. So hang in there and all the best to you. Mary

britta
Posts: 107
Joined: Apr 2010

What a comfort to talk to you. So glad you shared that information with me. I think Dr. Witzig is kind of modest, his nurse told me he was "world renowned" also and she felt so humble to work with him. Did I tell you how I happen to find him, was reading a book more than a year ago about a pastor who had lymphoma and he was treated by Dr. Witzig. When I was diagnosed, I went back and looked up his name (Witzig's) and emailed him. He emailed me back witin the hour and said, "come on down." Pretty "unassuming" for a world renowned doctor. After I'd made the appointment, I attended the lymphoma seminar and met him personally. Have you attended that? It was great, but a little overwhelming for me being newly diagnosed. It was during the first 15 minutes I found out FNHL is not curable, only treatable. That threw me for a loop for the rest of the day.

Thanks for sharing about the chemo brain, my mind gets so tired, it's hard to even write. I'm worn out from "thinking". Crazy. You're a lol, funny about the list thing.

You sound so good, I'm glad you're doing so well. Pray for all of you every night.

britta
Posts: 107
Joined: Apr 2010

Hi Mary,

I chatted with Betsy online and ordered the book, she said I'd have it by tomorrow so am looking forward to it. We can all relate to the title, so I'm sure she has a lot to share. Hope you are feeling good and your counts stay up. I was wondering how long it was between finishing the R-CHOP and starting the Zevalin. They wanted me to start within a month of finishing chemo, and I'm afraid if I go in with low counts, they're going to really go down. Oh, and by the way, I saw Donald had mentioned not eating sugar cereals, I noticed Fiber One Bran cereal and "0" sugars in case you are interested. Did they tell you at Mayo to stay away from plants, animals, etc., and to eat organic food, or is that somehting others have been told. Also, Hilde said she was on antibiotics for the first 2 months, are you also? Just wondering as I am allergic and the only thing that I haven't had trouble with is Cipro. So much to think about !

Notice you are an early riser, I'll just be going to sleep about the time you get on here. Talk to tomorrow.

Stay healthy!

Britta

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

Hello Britta,
Good to hear from you. I'm glad you chatted with Betsy. She is so nice and has so much info. You will enjoy the book too as there is so much to identify with and gives a lot of hope.
I finished the R CHOP at the end of March and had the Zevalin in April. You are right about doing it quickly. I think it's because then they don't have to repeat any scans or anything. I did have to have another bone marrow biopsy before the Zevalin. After that it was a series of 3 appointments to complete the treatment. I went on a Tuesday and had the Rituxan, a tracer dose of Zevalin and a scan then the following Friday for a scan and then the next Tuesday for the full dose of Zevalin and more Rituxin. My blood counts were OK. I'm not sure what they will do with low counts but am sure they will watch closely and know what to do in that situation. They are probably used to seeing that because of giving the Zevalin to post chemo patients.
I have not been told to stay away from plants and animals or given any eating restrictions or recommendations. I would guess others may have and not to suggest that it is inaccurate I just have not. So far I have not had any antibiotics to date but as I said my blood counts have been OK so far. I would think that maybe if the white count drops significantly they may give some as a caution. I better not brag too much I have blood work done this morning and all of the "my blood work has been OK" business may come crashing down on me. lol
I know it is a lot to think about and worry over. I was so recently in just that same spot. I can hardly believe it is done now. The good thing is you are so busy once you start the process that theres not a lot of time to think and then you are done. I will help in any way I can and best of luck to you with some prayers added in. Mary

britta
Posts: 107
Joined: Apr 2010

Hi Mary,

Hope your blood counts were good this week and the fatigue is not too bad. How are your leg muscles, still sore?

I haven't been sleeping well even after going off the Prednisone, I can't stop thinking about this Zevalin. Yesterday I read my notes from the Lymphoma Seminar and it said that Zevalin shouldn't be used on tumors that were greater than 5cn. While the tumor is gone now, I'm still wondering about that? I have a whole list of questions for Dr. W and won't be seeing him for a month or so.

Sometines I think we are so blessed to have good doctors, maybe we should just follow their recommendations w/o second guessing everything.

Thanks for being here for me, it sure helps.

Blessings to all, and God's strength for each day.

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

If you can tollerate the Cipro that is what your dr. most probably will do. I would think.
I am feeling much better , with just a few issues. Still have night sweats. But I am
dealing with things much better. I hope I have not put a dampner on the Zevalin that was not my intention. I was dealing with a lot more . I was also stage 4 and had bone marrow involvement. I hope that you and your dr, decide what is right for you.
My pet scan in February was good. So maybe it is working. I just wonder if there is anyone that ever had the Zevalin that relapsed. I know it is like looking at the dark side. But can not help but wonder. But I feel this way if it buys me 20 years I will be thrilled. I am already older so that is another worry. I am 64. Hope you all feel well.
Hilde

rdonald
Posts: 1
Joined: Apr 2010

Hello. My name is Don and I am a 5 year survivor of NHL. I possess a wealth of information on the subject of Follicular NHL. Unfortunately I don't have the time today to share much more than to suggest to Britta, that she take the Prednisone as early in the day as possible. Doing that will help with the "sleeplessness". I'm 68 years old. I lost my wife of 38 years to cancer in 2001. Since that time, I have been active as a volunteer at Karmanos Cancer Institue (An NCI hospital) and our local Gilda's Club. Last year because of 2 back surgeries, I resigned from the Board of Directors at Gilda's. However I'm still active on the Patient & Families Advisory Committee at Karmanos. In Michigan where I reside, we are fortunate to have 2 NCI hospitals. The other is the University of Michigan. I chose Karmanos because they do more stage one clinical studies. I Have had over 60 hours of training as a 'mentor'. If there is anyone on this board who feels like they would like to ask a question, I would be happy to respond with an answer, if possible. Don.

britta
Posts: 107
Joined: Apr 2010

Hi Don,

Thank you for the recommendation on the Prednisone. Yes, I certainly do take it as early in the day as possible. Still sleep evades me. Only one treatment left, so that will be behind me. I also lost my husband of 37 years to cancer 11 years ago, have since remarried and feel very blessed to have found two very special people to share my life with.

This venue has been a lifeline for me and I have learned so much in the week that I've been on. It is wonderful to be able to ask questions and share information with each other. It's such a lonely place to be (having cancer), no one really understands other than someone who's been through it. Thank you for being willing share with us and for mentoring others, I think it probably would give one's life a purpose. God Bless you and I'm glad you're here.

Britta

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

I am still dealing with some fatigue but my pet scan came back clear that was two month ago. June 2nd is my cat scan and then see the Oncologist.
I will at that time get my cbc taken. I am wondering where that is. Other then that I seem to be holding up well.
It sure was really very scary to do this, however it probably is the best way to go. It is nice to see you all doing well.
I was glad to see you all have not forgotten me.
Will promise to post a bit more. just dont want bore anyone.
I wish you all well. Hilde

britta
Posts: 107
Joined: Apr 2010

Hi,

I haven't seen you here for awhile and wondering how you are all doing? Mary, you must be out a month now from your Zevalin. Hilde, you must be out nearly 5 months, bet that's a good feeling - and you will be seeing your onc in June. Yogi, you must be out a week or two, how are you doing? And Don, we all know you are great and a good inspiration for the rest of us.

I just took my last treatment of R-CVP yesterday, just have to finish the Prednisone for 7 days and I'll be done. Then to Mayo June 16 for a catscan and propably set up appointment for Zevaln, not definite yet, I'm still praying about it, but getting more comfortable, thanks to you guys and Betsy's website. By the way, I was telling my onc here about Betsy's book, and during my chemo, he came and and showed me a book one of his patients had just given him, it was Betsy'. Small world.

Take care all of you and stay well and hope to hear from you.

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

Good to hear from you and glad things are moving along even though all is not decided yet. I think that was the hardest part for me. I am 1 month out and pretty much just have the fatigue but I will deal with it. Feel better the last two days. Blood work is taking a little hit but they are not concerned yet. My white count was actually at the upper end of normal and my platelets which started at 200,000 are now 116,000. That is still good I guess. We will see what next week shows. So funny about your MD and the book. I guess it was meant to be. We will all manage to stay connected somehow. I go back to Mayo on the 27TH. I am hoping all is good. I'll keep you posted and you do the same. All the best. Mary

britta
Posts: 107
Joined: Apr 2010

Hi Mary,

Congratulations on the twins being born, what a blessing for you and your family. Funny, by best friend just witnessed the birth of her twin grandchildred on May 15 and called yesterday, proud Grandma!

I guess I have pretty much decided to take the Zevalin, but I have some questions for you about treatment at Mayo, could we talk off-line. If you could write me at djhansen@live.com, I'd appreciate it.

Have a great day.

Britta

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

I'd be happy to. I'll get to you very soon. With those babies being born it's been a little crazy. My daughter went home yesterday but not the babies quite yet so that was hard. They were six weeks early but are both doing really well. I will talk to you soon. Mary

britta
Posts: 107
Joined: Apr 2010

Hi Mary and all,

Know today is when you're going for your checkup. Will be thinking about you and praying for a good report.

Tell us some news about your new grandbabies too. Boys, girls, or one of each, and how big, and how cute. We all need a some cheery news once in awhile.

Have a good day and write and let us all know how you are.

Love to everyone.

Britta

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

Hope you are going through your treatment with small or no problems.
I am doing pretty well. I wont say I dont have days of problems. But have other health problems , which makes me wonder about everything. But as much as I read about the Zevalin
was not too bad at all. I was scared at first but since my pet scan in February it was clear. So I am happy for sure. So hopefully my cat scan June 2nd will be just as good.
I wish you all the best. And if you are offered Zevalin I would surley go for it.
Well Britta I wish you well. Hilde

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

I was first diagnosed with follicular Non-Hodgkins Lymphoma in O4, Had surgery on the left side of my neck and they took out the gland and inside my cheek on that side and then did 20 Radiation treatments.
Was home free for one week away of 5 years. Then it came up on the right side of my cheek
So had surgery again to take out the gland on the right side on my cheek and nodules in my parotid glan. Well I was then diagnosed with stage 4, and had bone marrow involvement.
Did 8 treatments of R-Chop and then two rituxin , and on Dec. 23 I did the Zevalin.
My blood work went down pretty far. My wbc was just 1.1 and everything else went down really far like my platelets were only 15 so had a Neulasta shot and then it came up slowly. I dont know where I am at this point till June 9th. I have had a sore throat for a week now and pain in the corner of my jaw by my ear. Naturally I worry what this is.
I am truly sorry that you lost your wife.
What I would like to ask is about what negative stuff you have heard about the Zevalin?
thank you so very much,
Hilde

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