NEWLY DIAGNOSED WITH FOLLICULAR LYMPHOMA

theconklinwife
theconklinwife Member Posts: 3
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hi everyone--I'm 32 and was diagnosed in oct. with follicular lymphoma, stage 3, NO bone marrow involvement. The node was found in my right cheek initially and then there were additional nodes found in chest area,and groin. I am currently on my 3rd round of chemo. It is Velcade, Bendimustine and Rituxin (sp??). MY concern is diet, supplements and just what the LONG TERM prognosis is. My Dr. has only ever said "It's NOT a death sentence" And indicates it is something you "live" with. But my concern is that I have a horrific diet. And now w/ chemo I have to eat whatever i can stomach, which is not good stuff per se (cookies, pasta, no veggies at all.....) I worry about it and also wonder if i should be taking some type of supplements or multivitamins? ALL of my bloodwork all along has been excellent and outside of all the side effects to the chemo I have been doing well.... I guess I just wish I had more idea as to what the LONG term course of my life will be. I have 2 small girls (1 and 4) and I worry that this will just lead to a more severe cancer in the future.... ??? anyone with words of advice or knowledge or resources will be appreciated. I have lots of questions about the side effects i experience w. chemo, so if someone reads this and have the same tx. then let me know... I get this awful head pressure and tightness across my jaw and face that no one seems to know why... any help would be great! THANK U ALL! I look foreward to being on here often

Comments

  • jerzpilot
    jerzpilot Member Posts: 39
    #2
    Newly
    Hello wife and sorry to hear about your dx; I am 36 and dx with FNHL stage 4A. The nodes in my neck, chest, armpits and groin are enlarged and painless with bone involment. My Onc. said since there's no pain and the nodes are not large enough to put in jeorpardy a vital organ; that I should put off chemo therapy until than. From what I have read and talked about it with the doctor; there is no present cure, just treatment. We have to learn to live with it, get our treatments and watch out diets. I am kind of concerned that at stage 4 I am not having treatment, but since there is no pain and the nodes aren't "big enough" than might as well wait til that day comes. The body can recognize that this disease is an intruder an attack it, fight it off and get rid off it; it can also be so indolent that it would take years for it to show its presence. The best thing I can think off for my peace of mind is just not to think about it, accept it and learn to leave with it, hard to do though. Sometimes I do get depress because prior to my dx I had such a good life and now it is totally changed, so much that I even lost my job beacause of it. I don't mean to sound negative just expressing my feelings. I hope you feel better soon, keep us posted and God bless you and your family.
  • mpjass
    mpjass Member Posts: 1
    #3
    Follicular Lymphoma
    Hi~I was reading your post and I am not an expert but I too was recently diagnosed with Follicular 3A lymphoma in November. I am 28 and a Chiropractor so I was doing pretty healthy things for my body (working out 4-6 times a week, supplementing with vitamins/minerals, and eating as good as possible). I have a 9 month old baby and the doctor at Mayo told me that he thought that pregnancy is what played a role in allowing the cancer to get out of control. Sounds like you have some young children as well. Through this I have continued to supplement vigorously and I feel that it is helping me to not get sick as many people do with chemo. I am doing CHOP-R for 6 treatments, one every 3 weeks. My blood levels are good like yours each time and I am too dealing with eating foods that work for me right now, which may not be the healthiest. I look at it this way, get through this doing the best I can and when I am done with treatment I will get back to eating better. Nutrition is a big part of being healthy and I think that you can change things when you are done with treatment, you just have to start small, and realize that we are not perfect so do not feel badly when you do have bad food. I think that supplementing with vitamins and minerals is a must during this, but not just any supplements will do. Stuff you buy from Wal-Mart/Target, etc. is not the best quality. There are many great liquid multiviatmins that taste good and are easy to take while doing chemo, plus they are absorbed well compared to pills. (Examples:NingXia Red by Young Living or Body Balance by Life Force, I'm sure there are many others out there that you can find) Neither are cheap, but they are worth it. You can give both to your kids as well. As for what I think about the long term....I do not. Right now I am taking one day at a time and praying for total healing. And being a Chiropractor, of course I look for healthy alternative options and getting adjusted is a great way to help your body. Most people think of us as pain doctors but really we influence the nervous system when we adjust the spine. Your nervous system controls absolutely everything that happens in your body so if any of the spinal bones are moved out of place, putting pressure on the nerves, not allowing them to work the way they should, you are going to have symptoms. The pain in your jaw and face could be coming from a bone being out of place in your neck because all the nerves from your neck supply your head and face. You should check into a Chiropractor in your area. Hopefully some of this was helpful. I will be praying for you!
  • noreaster
    noreaster Member Posts: 4
    #4
    I haven't been to this site
    I haven't been to this site in quite awhile but saw your post. I'm currently 51 years old married dad of 4 older kids. Back in 2000 I was told I had a lymphoproliferative disorder but like others have said I didn't have any symptoms. It was found during routine bloodwork during a physical. My oncologist wasn't too concerned about it and didn't really know if it was lymphoma or leukemia but since I didn't have any symptoms it was the watch & wait routine. I was fine until the fall of 2006 when what I had became more aggressive so we had to start doing something. Once they got into it they decided I had small lymphocytic lymphoma, which is very indolent, for all those years and it had sort of morphed into Diffuse Large B Cell lymphoma, which was much more aggressive.

    Again, as someone else said, there's no cure for the indolent side of it but I had to have treatments for the more aggressive one. I ended up going through R-CHOP chemo and then it was recommended I have an autologous stem cell transplant, which I did. By Dec of 2007 I was back at work. I still have the indolent lymphoma but the more aggressive one is gone. At least for now. :^)

    The biggest thing we were told, and found it to be very true, is that everyone is different. How I reacted to the treatments and the side effects could be very different than someone else would. I don't know how many times we heard that but they were right. The good news is they're always progressing and coming up with newer and better, less toxic ways of dealing with this stuff. Personally, I try not to worry about it until I have to deal with it. I know it's easier said than done but that's my approach. I could've been worrying for years before I had to actually do something. Glad I didn't.

    Anyway, I wish you well and hope all works out well for you.
  • tad63
    tad63 Member Posts: 4
    #5
    FOLLICULAR LYMPHOMA
    GOOD MORNING WIFE
    MY FUTURE HUSBAND RICK WAS JUST DIAGNOSED WITH FOLLICULAR LYMPHOMA. ON THE 25TH OF FEB. WE STARTED OUR FIRST ROUND OF CHEMO R-CHOP VERY AGRESSIVE. WE HAVE ALONG WAY TO GO. TAKE IT ONE DAY AT A TIME DONT LOOK DOWN THE LONG ROAD. KEEP YOU CHIN UP AND GOD IN YOUR HEART. AS FOR RICKS EATING HABITS I ALMOST HAVE TO MAKE HIM EAT OR HE WONT. SO WE EAT SOUP HOME MADE CHICKEN AND NOODLES LAST NITE HE WANTED PIZZA AND HE TOLERATED THIS JUST FINE. WE STILL HAVE 5 MORE TREATMENTS TO GO EVERY 3 WEEKS OUR FIRST BLOOD TEST AFTER OUR FIRST CYCLE IS MONDAY HOPE ALL GOES WELL AND COUNTS OUR GOOD. OH YA THIS IS MY FIRST TIME TO THIS SITE AND JUST HAPPENED ACROSS YOUR STORY. YOU ARE IN MY PRAYERS AS WELL AS THE REST OF YOU. I AM THE CAREGIVER SO I MAY NEED SOME SUPPORT. THE ONE QUESTION I HAVE IS WHY DOES RICK SHAKE SO BAD? RICKS LYMPHOMA WAS FOUND IN HIS GROIN,ARMPITS,NECK AND AROUND THE BASE OF HIS HEAD STAGE 3.
    GOD BLESS TO ALL
  • Budski1279
    Budski1279 Member Posts: 19
    #6
    tad63 said:

    FOLLICULAR LYMPHOMA
    GOOD MORNING WIFE
    MY FUTURE HUSBAND RICK WAS JUST DIAGNOSED WITH FOLLICULAR LYMPHOMA. ON THE 25TH OF FEB. WE STARTED OUR FIRST ROUND OF CHEMO R-CHOP VERY AGRESSIVE. WE HAVE ALONG WAY TO GO. TAKE IT ONE DAY AT A TIME DONT LOOK DOWN THE LONG ROAD. KEEP YOU CHIN UP AND GOD IN YOUR HEART. AS FOR RICKS EATING HABITS I ALMOST HAVE TO MAKE HIM EAT OR HE WONT. SO WE EAT SOUP HOME MADE CHICKEN AND NOODLES LAST NITE HE WANTED PIZZA AND HE TOLERATED THIS JUST FINE. WE STILL HAVE 5 MORE TREATMENTS TO GO EVERY 3 WEEKS OUR FIRST BLOOD TEST AFTER OUR FIRST CYCLE IS MONDAY HOPE ALL GOES WELL AND COUNTS OUR GOOD. OH YA THIS IS MY FIRST TIME TO THIS SITE AND JUST HAPPENED ACROSS YOUR STORY. YOU ARE IN MY PRAYERS AS WELL AS THE REST OF YOU. I AM THE CAREGIVER SO I MAY NEED SOME SUPPORT. THE ONE QUESTION I HAVE IS WHY DOES RICK SHAKE SO BAD? RICKS LYMPHOMA WAS FOUND IN HIS GROIN,ARMPITS,NECK AND AROUND THE BASE OF HIS HEAD STAGE 3.
    GOD BLESS TO ALL

    I was dx with the same as
    I was dx with the same as your soon to be husband Dec. 2006. I had six rounds of R-Chop and recent check up was ok. Diet is very important and my wife went almost all organic.
    Dark greens are huge for me.Blueberry juice and anything high in anti-oxidents The shaking that he has maybe the steriods. I wanted to eat everything and could not sit still.
  • tad63
    tad63 Member Posts: 4
    #7
    Budski1279 said:

    I was dx with the same as
    I was dx with the same as your soon to be husband Dec. 2006. I had six rounds of R-Chop and recent check up was ok. Diet is very important and my wife went almost all organic.
    Dark greens are huge for me.Blueberry juice and anything high in anti-oxidents The shaking that he has maybe the steriods. I wanted to eat everything and could not sit still.

    BRACELETS
    GOOD MORNING BUDSKI1279
    THANKS FOR THE INFO. RICK AND I HAVE A QUESTION FOR YOU. DO YOU KNOW WHERE OR IF THERE IS A RUBBER BRACELET FOR LYMPHOMA I KNOW THAT IT IS NEON GREEN AND WHERE CAN WE GET THEM. GETTING READY TO GET OUR FIRST ROUND OF BLOOD WORK DONE HOPE IT IS ALL GOOD.
    GOD BLESS
    TAD63
  • Budski1279
    Budski1279 Member Posts: 19
    #8
    tad63 said:

    BRACELETS
    GOOD MORNING BUDSKI1279
    THANKS FOR THE INFO. RICK AND I HAVE A QUESTION FOR YOU. DO YOU KNOW WHERE OR IF THERE IS A RUBBER BRACELET FOR LYMPHOMA I KNOW THAT IT IS NEON GREEN AND WHERE CAN WE GET THEM. GETTING READY TO GET OUR FIRST ROUND OF BLOOD WORK DONE HOPE IT IS ALL GOOD.
    GOD BLESS
    TAD63

    Hi Tad,
    I am not sure about
    Hi Tad,
    I am not sure about the bracelet for Lymphoma, but when I was dx I asked all of my co-workers that wanted to support me to purchasing a Mel's bracelet. Mel was a personal friend of mine and there is a foundation in her name. You can read about it if you go to www.friendsofmel.org or google mel's bracelets. She was the nicest, kindest person I ever knew. Good luck and God Bless. Budski
  • tad63
    tad63 Member Posts: 4
    #9
    Budski1279 said:

    Hi Tad,
    I am not sure about
    Hi Tad,
    I am not sure about the bracelet for Lymphoma, but when I was dx I asked all of my co-workers that wanted to support me to purchasing a Mel's bracelet. Mel was a personal friend of mine and there is a foundation in her name. You can read about it if you go to www.friendsofmel.org or google mel's bracelets. She was the nicest, kindest person I ever knew. Good luck and God Bless. Budski

    bracelets
    GOOD MORNING BUDSKI
    HEY FOUND THE SILICONE BRACLETS ON WWW.AWARENESSDEPOT.COM ALSO I WILL BE PURCHASING A MELS BRACLET IN THE NEA FURTURE THEY ARE BEAUTYFUL. FIRST BLOOD TEST MUST HAVE BEEN GOOD DID NOT HERE ANYTHING FROM DOC. RICK GOES AGAIN TODAY FOR MORE BLOOD WORK KEEPING FINGERS CROSSED. HOW EVER I HAVE COME DOWN WITH A SUMMER COLD!!!! TALK ABOUT USING HAND SANITIZER AND LYSOL????????? I WORK FOR WALMART IN THE DELI AND IT IS HARD TO GO TO WORK WHEN RICK IS HAVING A BAD DAY THANK GOD I HAVE AN FMLA FORM FILLED OUT BY THE DOCTOR SO IT DOESNT HURT MY JOB. I HAVE GOT RICK TO TAKE WALKS HE WALKS TO THE POST OFFICE AND THE OTHER DAY HE WALKED AROUND THE LAKE WHILE I WENT AND GOT GAS. HE HAS ALSO ME GETTING MIGRAINS 1 ABOUT EVERY WEEK. IS THIS A COMMON SIDE EFFECT????????? HOPE EVERYONE ON THIS SITE IS DOING WELL. WOULD LIKE TO HERE FROM ANYONE. NEED ALL THE SUPPORT I CAN GET.
    GOD BLESS AND KEEP LOOKING FORWARD ALL THE WAY.
    TAD (TINA)
  • 711tom
    711tom Member Posts: 44
    #10
    Hi, I am sorry to hear of
    Hi, I am sorry to hear of your new DX. I was DX in 1993 with stage 4 FNHL. I have done 3 regiments of chemo through the years and one of those was a clinical trial with Rituxan and Bendamustine. The Bendamustine regiment while mild for me from a side effect perspective did change my apetite. I ate less and food tasted a lot different and often i would eat only because I knew I had to. I did lose a significant amount of weight during that time in 2005 but it was successful. I, since Dx, have always taken multiviatimins and added B-6, B-12, C, D. My DR is not a believer in more than a multi but he says it won't hurt me. I know you are worried about the long-term but I look at this disease as a chronic condition that has to be dealt with every few years. My first remission lasted almost 12 years and I have never really suffered from the disease only the treatment. eat what you want during chemo then get back on a good diet. I am a big believer in keeping in shape to fight the disease but I also like to have lots of fun whenever possible so I probably should quit the cigars and put the beers away. It is hard being dx so young. I was 34 when dx so i can empathize with your feelings. Hug your kids everyday and believe me you will find what you need inside to fight this and win.
  • hilde451
    hilde451 Member Posts: 229 Member
    #11
    711tom said:

    Hi, I am sorry to hear of
    Hi, I am sorry to hear of your new DX. I was DX in 1993 with stage 4 FNHL. I have done 3 regiments of chemo through the years and one of those was a clinical trial with Rituxan and Bendamustine. The Bendamustine regiment while mild for me from a side effect perspective did change my apetite. I ate less and food tasted a lot different and often i would eat only because I knew I had to. I did lose a significant amount of weight during that time in 2005 but it was successful. I, since Dx, have always taken multiviatimins and added B-6, B-12, C, D. My DR is not a believer in more than a multi but he says it won't hurt me. I know you are worried about the long-term but I look at this disease as a chronic condition that has to be dealt with every few years. My first remission lasted almost 12 years and I have never really suffered from the disease only the treatment. eat what you want during chemo then get back on a good diet. I am a big believer in keeping in shape to fight the disease but I also like to have lots of fun whenever possible so I probably should quit the cigars and put the beers away. It is hard being dx so young. I was 34 when dx so i can empathize with your feelings. Hug your kids everyday and believe me you will find what you need inside to fight this and win.

    Hi Everyone
    I was diagnosed with Follicular NHL in 04. Had surgery to remove a gland in my neck.
    Then did 20 radiation treatments. Was home free for almost 5 years. One week away.
    So last April it came back with a vengence. Stage 4. Had surgery on the oposite side of my neck. They took out things in my cheek. and some nodules in my paratid gland.
    Then did 8 rounds of R-Chop. Then two more rounds of Rituxin. Then December 23rd. I did Zevalin. A Radioactive treatment. So we will see how long this will keep it at bay.
    I just wonder , they say it has been successful. I would love to hear if there are any people that have relapsed after Bextar or Zevalin.
    Hope you all are having a good day.I wish you all well.
    Hilde

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