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follicular lymphoma treated with zevalin

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

Hi everyone,
I was treated for my lymphoma with six sessions of RITUXIN iv's and one with ZEVALIN from may 5th to June 10 2008. Went for a ct scan yesterday(8-26-08)and as expected,the Dr gave me a clean bill of health. PRAISE GOD!

best of health to all!

paulenarae
Posts: 3
Joined: Sep 2008

Maybe you have already shared elsewhere on this forum...but I was wondering the specifics of your Follicular Lymphoma. I don't ask to pry but to become more knowledgeable. I was dx with fNHL stage IV B; grade 2 with bone marrow involvement. Did you have different options given to you regarding treatment from your Oncologist? Was this a clinical trial?

Thanks and God Bless
Paulena

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

Hi Paulena,
I did have other options! Watchful waiting and conventional treatment. My treatment was not a trial. I am currently in the process of putting my experience in writing and you can view it in my blog at my "About Me" page here at CSN.

Don

Phil F
Posts: 8
Joined: Feb 2009

Hi Don:

Great news with your Zevalin results. My wife has NHL and was in remission for 3.5 years. Her latest scans have revealed a relapse and we are in the process of deciding on her next line of defense.

Her first line of treatment was CVP with retuxin, 4 infusions followed by Retuxinf maintenance at 6 month intervals for two years.

We are considering Zevalin and found you through our research process. Obviously she is apprehensive and does not know what to expect. We would like to hear from you, if you would like to share your experience.

Best regards,

Phil

danalea
Posts: 2
Joined: Feb 2009

I just found out this past wed that i have follicular lymphoma. can anyone direct me in the right direction with treatment. Can radiation alone do the trick?? was hoping so. In OKlahoma they have a tomo radiation treaTMENT that sounds very effective. have any ever heard of it? its suppose to one of a kind in OK--its a deaconess hospital in OKC. thanks for any suggestions.

Jane M
Posts: 2
Joined: Mar 2009

Hello and I guess we are in the same Place. I need info , and a friend who is going through this also.People keep telling me that they are sorry... Why can't they just say I'm sorry for what you are going through instead? I feel so afraid.
I had a bone biosy yesterday. I'm 49 and I have been really struggling with this news. I pray for all of you, And I pray for some support from others like me. Jane

elizabeth c
Posts: 2
Joined: Sep 2008

Hi Jane....I was diagnosed with folicular lymphoma last March......it will be ok...you will go through a process and be back to normal....I would be happy to answer any questions you might have.

Elizabeth

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

Hi Phil, Sorry to hear about your wifes relapse. I haven't been here at this site for a while due to LIFE's daily routines. Living, working, paying and playing. I thank God every day for the blessing of LIFE that he has givin me and the opportunity to express it.I am feeling great! It is my opinion that zevalin is a treatment option that will provide many with renewed hope and dreams. I am still cancer free and going through rituxin maintenance every 2 months.If you haven't made a decission as to your next coarse of treatment yet you can read my story in my profile>blog. It is not yet up to date but, hey....who has time to worry about what was? Live for now!
My prayers and blessings to all.

Phil F
Posts: 8
Joined: Feb 2009

Hi Donald:

Thanks for your reply. Jeri did proceed with the Zevalin treatment and tolerated the procedure very well. She had the injection on March 12th and since then her bone marrow has been affected resulting in very low counts. White, Red and Platelet counts have required transfusions and daily injections of Nueprogen and weekly injection of Procrit. Her counts have been low since the beginning of April.

Were your counts low? If so, for how long and what did you do to boost your counts?

Hope you're still well and enjoying life.

Best regards,

Phil

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

Hi Phil,
I'm glad your wife was able to tolerate the zevalin. I am sorry to hear that her counts are low but that is to be expected. I am sure that they will all correct themselves in due time. I thought that when my counts dropped they would recover really fast because of my seemingly good health and positive outlook on the whole ordeal. However, when I found myself going in for my weekly checks it seemed as though it was taking too long making me think something wasn't right. Turns out things were as they should be. I was just too impatient. My counts started dropping off to the point of having to take normal precautions about 5 weeks from infusion and returned to acceptable levels about 4 weeks later. I did not require any medical attention during this time or any other, praise God! As for what I did for my counts was this. From the time I new to expect the drop I pretty much confined myself to the house. Avoided things such as people, plants, flowers, animals, berries, grapes, sugar and coffee. For helping boost my counts I just tried to eat all organic and took a product called IP6. I started taking this as soon as I found out about the cancer. I also took a wide array of vitamins and supplements. What worked and what didn't? I couldn't say. It is very important to change your diet to one that makes your body more alkalined and less acidic.
As for me I am doing great still. I go on the 6th of May for my next ct scan and will find out that I am still free of any cancer one year from starting treatment.
I will pray for you and your wife and I am sure all will be fine for you. Please keep in touch.

Phil F
Posts: 8
Joined: Feb 2009

Hi Don:

Hope your results were NED! Jeri's counts are still very low which has resulted in transfusions of Platelets and Blood. She also has been receiving daily shots of Neuprogen for the White counts and once weekly shots of Procrit to boost the red counts.

Her most recent transfusion(May 4) generated a reaction which landed her in the ER and then admitted for observation and more tests. Test results were good with no signs of disease. As you know, waiting for results is trying. They did find that she has Gasteritis which has generated alot of discomfort. She's tough and is willing to do whatever it takes while maintaining a positive attitude. She was released on May 6.

As a result of the transfusion reaction her White blood counts jumped to elevated levels and then settled back to the normal range....first time in a month! Maybe thats good news, the bone marrow is reacting! She'll have a CBC again tomorrow and we'll see how the counts are then.

We're looking forward to the 27th for a CT Scan to see how the Zevalin performed.

Again, hope your results were super. You are in our prayers as well.

Keep smelling the ROSES!

Phil

Jane M
Posts: 2
Joined: Mar 2009

Hi Don
I have recentyly bee told of this same cancer two days ago. Gosh, I feel so afraid...I had a bone marrow biopsy yesterday and we are awaiting the results. Last week they removed a tumor near my ear. This is how they found this cancer.
I pray you or anyone reading this will respond . I can not sleep, eat or think, which I'm sure has been the same for many of the survivors I have been reading about.

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

Hi Jane,

I’m sorry to hear about your recent diagnosis. Do you know exactly what you have and what stage you’re in yet? The important thing is to stay strong and positive in attitude end belief, ask questions to your doctors. Any questions! There’s no such thing as a stupid question when your life is involved. Having cancer these days is not an automatic death sentence. There are many new and promising treatment options available to us now and more to come. Research and learn all you can to help you make your decision for treatment if possible. For me, I new that I didn’t want to go through conventional chemo and radiation right away and felt as though my coarse of treatment was shown to me almost immediately upon my search for information about Non Hodgkin’s follicular lymphoma. Everything fell into place and worked out just as though it was all planned ahead of time. I hope that your journey into your new life will be as fulfilling. Remember! Life is what you make of it. So make the most of all you can. You’re in control. It’s your life, your cancer and your decision what happens from now on. I will look forward to hearing from you soon. I hope that I can be of some comfort and support for you.

Phil F
Posts: 8
Joined: Feb 2009

Hi Jane:

My wife was diagnosed with stage 4 Non Hodgkins Lymphoma in May of 2005 and just as you, we were initially shocked and petrified. She had a grapefruit size tumor between her lower back and stomach and her bone marrow was involved as well. As Don said, it's not a death sentence. Just like being in the water when someone shouts, "Shark", you're immediate reaction is, I'm doomed. Not so, it happens all the time just like a cancer diagnosis. There are treatments available. One thing for sure, you will become proficient in research.

My wife, Jeri, received four treatments of Chemo with Retuxin and was in remission after 3 months. She then had Retuxin at 6 month intervals for two years and remained in remission until January of this year(Another shock and one year after last Retuxin). Her Dr. didn't want to continue the Retuxin because there wasn't enough clinical data to support prolonged use. Her Dr. recommended Moffitt Cancer Center in Tampa for a second opinion and treatment. They recommended Zevalin, which she received on March 12.

You will probably receive a lot of recommendations from friends, family etc. They all mean well and love you. Your course of action and treatment is up to you. Their support and a Very Positive Attitude on your part as well as everyones is a BIG part of your treatment.

Make the best of each day, and before you know it, you'll see the light at the end of tunnel and move on with your life.

Phil

Ckaisor
Posts: 2
Joined: Jun 2009

Phil,

Hi, I was wondering how your wife is doing now since the Zevalin treatment? My mom just had a bone marrow biopsy to see how much involvement is in her bone marrow. She was diagnosed with a type of Malt lymphoma. The doctor is thinking about giving her Zevalin treatment since the Rituxan and CVP-R failed for her.

I am just looking for people that have been treated with Zevalin and wondering how it is given and how they are doing. My mom is going to be 74 in two months and has other medical problems also.

Thanks.

Cindy

Phil F
Posts: 8
Joined: Feb 2009

Hi Cindy:

She's doing very well! Her last CT Scan showed no evidence of disease...the Zevalin worked for her. Her blood counts dropped really low about 4 weeks after the treatment, which resulted in transfusions of blood and platelets as well as daily shots of Nueprogen to boost white blood and a shot of Procrit to boost red. It was touch and go to keep her from catching anything or getting cut, bruised etc.

Her blood is close to normal now and is getting better. The Zevalin will continue to work for another 3 months and hopefully a long remission will follow.

The Zevalin treatment is relatively easy compared to Chemo. The treatment requires two low doses of Retuxin which is infused(3 hours each, a test dose of Zevalin to determine if the body will process the radiation properly and if it does a week later the second dose of Retuxin is infused followed by Zevalin. It is administered by an injection(less than 10 minutes). Total treatment including Retuxin is about two weeks.

If your Mom has bone marrow involvement greater than 25%, Zevalin cannot be administered.

Good luck with your Mom's treatment and progress.

Phil

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

Phil and Wife congrats! I am glad to hear of her progression and that zevalin is working for her too. Big Cheer!

Don

Mary Nace
Posts: 1
Joined: Jun 2009

Hi Don: I am Mary and our daughter Rachael is fighting the fNHL also. Rachael was 32 win she was diagnosed and of course we were all very scared and upset for Rachael's well being. we never had any cancer in the family before so we were totally unprepared for this challenge in life.. but we soon became very good at searching for answers. I found a site called lymphomaservival.com run by Robert Miller who lives in the western part of Canada and is a 23 yr survivor of this type of cancer. My question for you Don is about organic foods and supplements. Rachael started on this life style change after much research.. We have learned all about the organic foods and of many supplements. also organic soaps and deoderants etc.
Rachael also has been going to a homepathic clinic in New Enterprise PA. She and I have learned so much about this new life style change she must do... Rachael was at stage 3A when diagnosed. When Rachael was at Hershey Med last March the oncologist could not believe how the tumors in her arm pits and her groin had disappeared. there was one tumor on the side of her neck that was still palpable but had shrunk a lot. he was very pleased. Rachael goes between Hershey Med Center at Hershey PA and the homeopathic clinic in New Enterprise PA
The thing that concerns me is that Rachael refuses to let them do anymore PETscans because the homeopathic clinic says she should not do that... and they advice her to have tomography. well her insurance will not cover anything to do with the natural way of treating this cancer.
I was wondering if you had tried this method of treating the cancer for a while before you took the zevalin treatment. I have a nursing background and while I respect my daughter's decision to go all natural to I think she should combind the natural with the scientific method of treating this disease. Rachael takes a lot of herbal supplements and ionizes her drinking water. She is not to go swimming at the Y anymore because of the chlorine. there is much more that she has changed in her life style.. Rachael is married and the mother of two beautiful little girls. She has Alivya who is 5 and Elliannah Rose who is 2. I would appreciate your thoughts on what I have told you. I pray you stay healthy and positive in your life challenge. Blessings to you and your family.. Mary

KYPam
Posts: 6
Joined: Jun 2009

Hi, Mary

My name is Pam. I was diagnosed 05-01-08 at age 41 with Stage 3B fNHL. I had 3 rounds of fludara, novantrone, decadron, and Rituxan followed by Bexxar. Bexxar and Zevalin are the only radioimmunotherapies approved by the FDA.I am in remission now, but still have PET scans every 3 months. I don't know any other way to keep a watch on the cancer besides PET scans. I have stayed away from natural treatments and supplements. My onc wants me to check with him before I take any medications, period. I want to keep a close watch on the cancer, because fNHL is very unpredictable and erratic. My onc states over and over that it will come back. It is just a matter of when and how bad. I feel lucky to be a survivor and pray for a long remission. Each onc visit every 6 weeks brings stress and anxiety because you just never know. It has been a long, exhausting year, but I have made it.

Best wishes to you and your daughter, Rachael.

Pam

tpositive
Posts: 2
Joined: May 2010

Hi Mary,

Can you guide me as to what supplements etc is your daughter taking and what are good organic stores for these kind of supplements. How does ionizing water help.
Please advice.

Rgds
tpositive

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

My doctor sent me to a research Dr at Moffitt and he told me the Rouxin would give me an 80% chance of my NHL Stage 3 A not coming back for 7-9 years. I love Moffitt and my Dr at Gulfcoast Oncology. God bless your wife and you as the caregiver.

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

Hello : my name is Hilde, I have relapsed in April and was first diagnosed in O4,
So now I did 8 treatments of Chemo , Rituxin and other things.
Now I did a scan and a bone marrow and came back clean. Because my bone marrow was involved. I was diagnosed as stage 4.
I am to start Rituxin and Zevalin on Wednesday. I am a bit anxious about it. I wish I would not be. I guess it is like everything else you cant always worry about the side effects. I wish to have a piece of mind.
Thankyou for listening to me.
I wish you all a Merry Christmas too.
Hilde

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

Hi Hilde,
How are you? So sorry to hear about your relapse. I can relate to your anxieties too. I was anxious but by the time I arrived for the procedure those feelings had gone. I had a good positive outlook for the positive effects I was going to get from this treatment. I could actually feel the zevalin working as I walked from the nuclear medicine building. I could feel it burning in the enlarged nodes. There were no bad side effects for me at all from this tx.. All went very well for me as it will for you too, I’m sure. The most important thing to keep in mind is precautions. When the time nears for your white blood count to start dropping be sure to protect your self from all possible factors. You can ask me anytime for help if you don’t get info from your doctor that administers the zevalin dose. I pretty much confined myself to three rooms in the house and no company. Just me and the wife! The pet birds were placed in a room of their own and the door kept shut. All plants were moved to a separate closed room or out of the house if flowering. You can read my story if you think it might help. Go to my profile and click the blog tab. I am a big advocate of zevalin! It works! However, not everyone is the same so not all reactions will be the same but it does have good responses from it’s recipients. I hope you find comfort and peace of mind and know that it will work. Keep in touch and let us know how it goes tomorrow. Good luck!
Stay strong and positive

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

Hi Don:

It was so comforting to read your post. I am feeling better about the Zevalin.
I had the first does On Wednesday. And of course the Rituxin first.
Then today I went for a full body scan.
On the 23rd I will be getting another round of Rituxin and then the second treatment of Zevalin.
I sure hope I do as well as you. Where do I have to stay away from? My mom is in a nursing home and I have still been going every other day. But I dont know if that will be a good idea. I suppose my siblings need to step in.
How long does it take for your low counts to show up. I have been told not to go around people that are sick.
I was so glad to hear about your experience , that it is making more at ease.
I was so anxious about it. But you have made me more at ease. Does the dr who adminsters this tell you what to do about all of the staying away from stuff? My body scan I did today turned out good, to go ahead with the second treatment. I had 8 chemo treatments, my last one was October 21st.
I sure you hope you have a wonderful Blessed Christmas with your family.
Thanks so much for answering some of my concerns.
Hilde

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

Hi Hildi,
Thumbs up to ya on the “go ahead” status of your tx. Sounds like your gonna get your Cristmas gift early. When you go on the 23rd the procedure takes a little bit more time than what you went through for the tracer. No big deal! Right? Twenty to thirty minutes and you’re your on your way home.
It takes 4-5 weeks from administration of the zevalin before your white blood count begins to drop. They will monitor your counts every week, so you will know. I think it would be a good idea to keep away from the nursing home during that time. If you absolutely must go, wear a good surgical face mask and try not too touch anything. As far as the doctor telling you all about what to avoid and any other safety precautions, they should, but you might have to ask. There are even certain foods to avoid. Remember this, If you can’t peel it, don’t eat it. That’s for fruits! Red meats and eggs contain lots of anti- biotics and chemicals. Use organic! NO green tea! No almonds! Milk and sugar are two things that cancer cells thrive on and that’s not just during low blood counts. Your body ph needs to be more alkaline than acidic. Consult your doctor if you have current kidney issues. Search alkaline and or acidic diets”. Hope this is some help to you. Look to hear from you.
Stay strong and Positive†

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

Hi Don:

Thank you so much, it helps getting some advice from someone that has been there and knows what to expect.
I am definatley staying strong. I wont say sometimes I have had my time to fall apart.
But going to do my best to keep it going.
I will have to check out a different diet. It is hard to know what to eat. I usually eat cereal every morning so I guess that is out. What may I ask did you eat?
Just some ideas would be great.
I hope to ask the dr some of these questions too.
Sometimes you have all these questions and then you forget when you are there.
How often do you get a scan now?
Hope you are feeling good. Thankyou so much for answering all my questions.
Hilde

scbell54
Posts: 4
Joined: Mar 2011

Hi Don, I am new to this site and have found it to be very uplifting as we are currently being fed a lot of negative facts from our doctor and hospice at home care givers (a service recommended by our doctor) My girlfriend of 10 years has Non Hopkins lymphoma and is currently into the start of the 6TH week of her first Zevalin 90-Y treatment and has been informed that her blood counts have dropped to a very low concerning level. She has a problem with infusions as her late husband (who also died from cancer), had a very bad reaction to his very first infusion and she feels that this was what actually led to his untimely death and of course this has left her apprehensive and scared of this form of treatment. She also developed lymph-edema about 30+ pounds of weight gain (from a pant size of small to an XXL), which we are currently visiting a CLT Therapist for treatment with some signs of success. She is also experiencing an eating difficulty due to gastritis, irritated abdominal disorder, and various stomach disorders associated with the same (Cancer and medication side effects): In other words it hurts to eat and she has lost a lot of upper muscle mass and strength due to this problem (uncertain about the lower half due to the edema; But, more then likely it is in the same condition), which has currently left her in need of a wheelchair for mobility. We haven't a clue as to when and if she will receive any testing to find out the results of her Zevalin treatment as it is beginning to appear as if her Doctor has already given up on her (?), as he has stated that there is nothing else that he can do for her beyond this Zevalin treatment. Did you experience any of this problems (or know of someone else who has); And, would you consider these symptoms to be normal; And, possibly have any good advise for us in dealing with them. Steve & Carolee (scbell54)

tpositive
Posts: 2
Joined: May 2010

Hi Donald,

I read your blog is Zevalin only done in Alabama or other centers as well. What do you think of wait and watch I know you said you were not comfortable but is it okay to do strong treatments earlier on.

Also I know you mentioned IP6, any side effects for this. And have you heard of Devil's claw medicine. I read a report bt a vancover doctor that said there was reduction in size in 9 out of 44 patients.
Also is almonds and milk and eggs are bad all the time or just when you are under treatment.
Any site I can read for dietary advice.

Thanks for all your information.
Tpositive

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