follicular lymphoma treated with zevalin

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Comments

  • hilde451
    hilde451 Member Posts: 229 Member
    donald51 said:

    Zevalin
    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

    Zevalin
    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
    donald51 Member Posts: 62
    hilde451 said:

    Zevalin
    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

    Zevalin
    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
    hilde451 Member Posts: 229 Member
    donald51 said:

    Zevalin
    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†

    Zevalin
    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
  • tpositive
    tpositive Member Posts: 2
    Some questions.
    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
  • tpositive
    tpositive Member Posts: 2
    Mary Nace said:

    my daughter Rachael
    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

    Some questions for you
    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
    JoanieP Member Posts: 573
    Phil F said:

    Your prayer
    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

    Love Moffitt
    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.
  • scbell54
    scbell54 Member Posts: 4
    donald51 said:

    Zevalin
    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†

    Zevalin
    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)