hi, I was just diagnosed 3 weeks ago with grade 1 follicular b-cell lymphoma. I will start having chemo with bendamustine and rituxan I am scared to death. I'm having trouble coping with it. Doctors say it has a good "short term prognosis" how short are they talking about? how will i do with all this drugs in the long term? I know is hard to predict but i keep thinking about the future of my two kids age 12 & 6 without a mom I am 41 years old. I just breaks my heart. Especially b/c my brother in law past away as I was having all the diagnostic testings. He had T-cell lymphoma and lasted only 2 years he got septic with an opportunistic infection. Is there anybody who is in remission after chemo? how is the quality of life? are the wt. loss, nausea and fatigue unbearable? will i be able to work ? how long will i live? I pray to god (although i have never been religious) now I HAVE to BELIEVE that everything will be ok.
Hi Eris2, I do not have direct experience with what you are going through, though I am here to offer my help and support in any way that I can. I am hoping that one of our wonderful Supporters will give you some insight. Please know that we are here for you. You are in my thoughts and prayers.
Dear Eris2, I am sorry to hear of you DX. I know researching info on your type can also be scary, but it does help to clear up some questions. I would make sure you read only the most recent info because a lot has changed in the world of lymphoma. And it is all good news. There are many, many people who go into remission after chemo. If you scan through some of the old post you can read countless posts where chemo has given them a new life. Also there is lots of advice on diet, energy, loss of hair and how to handle it, etc. I know we also have several people who post that have your type. I am going to try and track them down and send them your way. Take all this one step at a time, let the information and help remove the fear and get rest when you can. We are here for you so post whenever you want. I am sorry about the loss of your brother-in-law, that in itself is hard to deal with. But as I discovered when reading about my own type, there are so many kinds of Lymphoma and they all are treated differently, and even the ones that are the same are treated diff by diff Onc doctors. So the more we can find out the better our understanding. I will keep in touch. When do you start your Chemo? At your place of treatment do they have a patient advocate available to answer treatment questions for you? We were and are all new to this and together we will help you get through the maze. Kathy
Hi again, just wanted to mention check out the black box to the right on your support page that it called LymphomaInfo.net . It has a whole section about your type. I see it is slow growing (indolent) like my type. They also have info on the grade. If you don't mind my asking have you gotten a second opinion? Because different Onc treat these types differently you should consider it. Most insurance co. want you to get seconds because it may save them money on treatment. I am stage IV SLL but am doing what is called "Wait & Watch" and I have been on it for a year now. I have scans and blood work done every 3 mos to make sure nothing is changing. And actually my nodes have shrunk on their own and all my numbers have improved. The latest stats show that the Wait & Watch outcomes are as good as those who have had chemo treatment when you have the slow growing forms of lymphoma. My first doctor wanted me to do chemo and my second at MD Anderson thought I should do the Wait & Watch. Also, I want to "save" using the drugs in case I need them down the road. Chemo is very hard on the body and certain drugs they don't like to use more than a few times. Because my type is incurable I choose to save those "Big guns" now while I am having few symptoms. I hope this isn't confusing you worse but didn't know if anyone had told you there are options for treating this. Because of your stage and grade I think it is something you should consider as an option. There are several people on this site that are doing the W & W. You need to know just because one onc doctor says this is how we are going to do this, you always have the final say. I even had a port put in because I was told to by my first doctor. I didn't use it once during the year, except to have it flushed every 4 weeks. I finally had it removed after my last scans showed I was moving in the right direction. I know all this is overwhelming and a lot to deal with which is all the more reason you need to know all your options up front. God Bless, Kathy
Hi Eris,Welcome aboard but sorry you need to be here.Very surprised you are getting treatment unless you have nodes affecting organs or symptoms causing discomfort.I'm also Follicular Bcell stage 3.I'm still here going on 17 years now.Started all this around your age I'm 56 now.Many people go into remissions after treatment.My longest ones were back in the first 5yrs.Been maybe one of the lucky ones not to be bothered with many side effects until my present treatment Treanda/Rituxan.They have great meds to help with all that.As far as working I did not work through my first Chemo Chop.I have worked since through treatments just not on the days of.Try and shake some of that stress off as that is one of the WORST things to have.Almost like dragging a full bag of rocks around all day long.Know your scared but I hope I've helped ease your mind some.Have had a very good life,of course I don't consider Chemo fun but I can think of way worse things to have happen to me.Don't let the cancer rule my life.If you have more questions please come back and ask us,we'll do our best to help you get through this.God bless,Michele
Hi Eris, I have stage 4, follicular lymphoma, small and large B cell. I was treated with 'Rituxan', only and had great results. I agree with the other person. You should get another opinion. I got 4 , LoL..I would think with stage 1, u should be just fine.I will also say that, you are getting alot of drugs and I for one, want to wait till I get worse, for the Big Guns, for later also. Trust in yourself, and listen to your inner voice, God is talking to you. Otherwise you wouldn't be here asking questions. Go get another Doctor, then decide. Keep the faith...
Hi Eris, Hey Hun I know that you are scared, and we are all here for you. Learn as much as you can about your kind. Knowledge is Power. I know it sucks, but these idolecent forms are chronic so it's a life long battle. I to have an idolecent form and was only diagnosed in Dec. it is a lot to take in. This is a great place to get support, info, and to vent. This does not have to be a death sentence. I am 33 and have 3 children at home. 15, 11, & 8. I am disabled do to Lupus. So I have double chronic illnesses. It's ok they say what doesn't kill us only makes us Stronger, and you are Strong. You will find your strength and when your weak we are here, and when you are Strong share with others that are feeling weak. Together we lean on eachother and make eachother stronger. We are here for you, and one day you will be there for someone, maybe me. If you ever need to talk I am here. I don't know about the bendomustine that you will be getting, but I am on the Rituxan and so far I have not had any negative effects. I am tired the day of and the day after, but I think tht more from all the benedryl they give. I'm tired all the time anyways. Good lick with your treatment and I do agree to get a second opinion. I did and I am glad I did because mine has spread to my brain and spine which very rare, and my first onc didn't believe it.....well my mom just got here....bye.....JO
Jo,Such sweet encouragement when you yourself have a plateful.My heavens where do you find all your strength?Praying your treatments are working well and in no time you'll be strutting your stuff.Hugs,Michele
It's so weird to me that everyone thinks that I'm so strong even my theropist says that I am one of the strongest people he's ever met, but honestly I am not that strong. I just have good advise. I've been through alot in my 33yrs. I was in foster homes and a victom of all kinds of abuse growing up, but I just give advise based on my own experiences, but I am not strong. I go on because I have to. I am very respondsable and that keeps me going. I don't see what others see. But I love to help people and if my experiences can help someone else then I will share. That's why I became a nurse. Unforetunately I can't work anymore. My theropist, & my husband want me to write a book. I've always wanted to maybe it could help others. I don't know. well see. I just want others to know that no matter what they are going through that they are strong enough to make it, and when they feellike they can't that we are here to listen and help in any way we can. I know it's hard to stay strong, but with the help of others who understand we can get through anything. I need all of you, and in turn I will be here, too. Everyone be well and if you don't feel well and want to talk I'm here...Talk to ya all soon....Just came home with a bunch of flowers to plant pray for good weather tomorrow.......JO
I am 1 year 2 months post Chemo. I am sitll in remission. I will tell you 1 thing my docotr said when i ask about how long i have to live. He said Dont let anyone tell you how long because everyone is different. Your age is a plus and the new treatments, and strides they have made in NHL is amazing. Just LIVE. I know its hard and trust me I've had many days and nights of stress and worring. I wont say I am done with that either. I am thankful my kids are grown. I still work almost full time. My friends say I made it easy for my family because i never stopped and someitmes my husband doesnt live in the real world when it comes to my illness. Maybe not but i refuse to sit back and wait to die. I live my life very normal. I do the Rituxin every 6 months. I am stage 4 NHL. I have 1 lymphnode is slightly enlarged but hasnt changed since last Feb 2010 scans. Kiss your kids and plan on living for them and yourself.
Tammy
Hi Tammy Couldn’t have said it better myself,totally agree!!!Guess though when ya first start this journey it takes time to get here.Have a good day,Michele DX95FNHL3
Hi Eris2,
I have follicular lymphoma grade one stage three and I plan on living over 20 more years. Go to the very best web site on just our diagnosis..lymphomasurvival.com
This is the best site for us. I am 2 years in and my disease is 'regressing' because I am doing the natural strategies suggested by this website.
Stand tall - you will be fine!
Lulu
Good points, well spoken!Michele … Dx95FNHL3
I have to check out this myself. I guess i dont look at much. In the beginning i did but got to upset by all the negitive, so i stopped looking for info.
Knowledge is POWER.Afterall this is our 1 and only life here we’re talking about and living it out to it damn Fullest.With or without cancer though the road of life can be bumpy.We’re listening,Michele DX95FNHL3
Thanks Michele, I say ride the wave..There will be highs and lows. I know the day they told me I was in remission was a definate high and the day i was diagnosed was a very low point , and a lot of in betweens.
Your so right have hit the wave face first before.Thanks,Michele Dx95FNHL3
Hi
I can vouch for the website lymphomasurvivial.com as an excellent source of information for follicular non-Hodgkin lymphoma. It gives you some sound advice and practical things to do to help yourself.
Like Lulu, I plan to be around for a very long time. I have the same as you, am 49 and life has just begun. I am in remission after 6 rounds of R-chop and don't plan on any more treatment for a very long time.
So try to read some information, you will feel a little more empowered and above all, when you get frustrated, tired or upset, vent on this forum because we all understand.
Dina
Dina I’ve watched his site for many years.It’s an inspiration to all.I know I’ll be around for years to come its the the highs and lows that beat us up along the way.Stress&Waiting we’re pros at it.Just sometimes the stress can cloud the thinking.Thank the God lord we have each other here to lean on.Even after nearly17yrs I still have my moments unfortunatly .Thank you and take good care,Michele Dx95 FNHL3