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Newly Diagnosed

Gloworm81
Posts: 1
Joined: Mar 2013

Hello everyone,

 

My name is Ciri, I am 31 years old and I was recently diagnosed with B-Cell Follicular Lymphoma.  I am here for support.  With hopes that someone who is going through the same thing can help me deal with it all.  I have two little girls who are my world, Delcia who turns 8 next week and Ava who is 2.  I am scared of the unknown and the what ifs.  I keep reading that it is treatable but not curable.  I have an appointment with my oncologist this Tuesday to discuss treatment options. 

 

Praying for the best,

Ciri

NANCYL1
Posts: 225
Joined: Jun 2012

Hi Ciri:

I have mild B-Cell Follicular Lymphoma.  Had tests last year and started on Rituxan infusions in May of 2012, a set of infusions every six months, ending the end of this year.  What,  after that, I,  of course, do not know.   I think we both need more information from our oncologists.

I have done well with the infusions, i.e., the blood reports are a good deal better:  White cells, red cells, and platelets are now normal.

Take a list of questions with you when you go to the oncologist.

More people will be commenting; they are all very helpful and empathetic here.

Let us know how your appointment next Tuesday goes.

Nancy.

 

jimwins's picture
jimwins
Posts: 1983
Joined: Aug 2011

Hi Ciri.  I just wanted to welcome you to the group.  I had Diffuse Large B Cell Lymphoma and have been in remission now for about a year and a half.  Please know Lymphoma is very treatable and they are coming up with new treatments all the time.  Please know you are not alone and there are many good folks on this site to support and encourage you on your journey.

It's normal to want to research this on the Internet but please take it with a grain of salt. The information out there can drive you crazy and it may not all be accurate.  Anxiety comes with this so if you have not already done so, you may want to request anti-anxiety medication.  Believe me, it really helps with the "worry monster" :).  Attitude and humor are your free allies in this war and will prevent you from becoming your own worst enemy at times.  You are young and that is definitely in your favor in dealing with this.  

Please feel free to come here to talk, vent, ask questions and offer support (when you are ready).  I'm sure others will chime in soon.  Good luck on Tuesday and know we'll be there with you in spirit.  Please keep us updated too :).

Hugs and positive thoughts,

Jim

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Ciri,

 I can not add anything extra to what Jim has said. He is 100% correct. John

anliperez915's picture
anliperez915
Posts: 742
Joined: Sep 2011

Hi Ciri,

Just wanted to welcome you to the group,

I know that you're really scared right now and that you have a  lot of questions. We have all been where you are right now, trying to google everything, I still do that sometimes but I have to remind myself that everyones unique and not everybody has the same circumstances. I also have kids not as young as yours, my youngest daughter just turned five (they could turn 40) I think we would still worry about them. You can read each person story if you click on the picture, please try not too worry to much (I know its hard not to). Take care of yourself and please keep us updated. 

Sincerely,

Liz

lianadw's picture
lianadw
Posts: 72
Joined: Jan 2013

HI Ciri,

I was diagnosed with mediastinal diffuse large b-cell lymphoma last October. The treatment so far has been pretty manageable. I also have a daughter who turns 8 today. We celebrated her birthday last Sunday as I'm doing inpatient chemo now. I also have son who will be 10 in April. Getting the diagnosis was very scary initially, but I'm confident of cure now, and my kids are doing great through all this. You may be a little more challenged with a 2 yo, just call upon your support system for help.

There's a lot of wonderful and wise people on this site, that make this journey easier. Keep us updated.

Warmly,

Liana

rclaxb's picture
rclaxb
Posts: 13
Joined: Sep 2010

I know have you feel.  I felt the same March 26, 2009 when I was diagnosed.  Do not be alarmed it your oncologist suggest the "watch and wait".  I was on that path 8 month when a second node was removed and chemo started.  I was luck and did preety well with chemo unitl it was over then had a week in the hopsital.  After 2 years on Rituxan, I am in remission and see the doctor every three months with CT scans once a year. My Nov. scans showed a swellon node but my doctor felt it was an infection so I will have CT scans in May.  My life is pretty normal.  My primary physician, when I would visit him, kept asking me questions and after a year after being diagnosed he told me he thought I was depressed.  I have been on medication for depression and that has really help.  I really do not think about my NHFL on a daily basis.  I did get involved in the St. Louis LLS "Light the Niight" walks and race for the cure.  I ran in two 5Ks since treatment ended.  I am fortunate to live close to St. Louis so I have a leading oncologist at the Sitemen Center in St. Louis.  I have all the confidence in her!  Good luck, and your future is ahead of you!

Rich

Sharlena's picture
Sharlena
Posts: 4
Joined: Mar 2013

Hang in there and don't panic! Keep your head up and pray!

I was diagnosed in January with NH-COMBO Lymphoma and it was such a shock, I know how you feel. Lymphoma is managable and after your doctor gets to the bottom of it and you get a treatment plan you will have a plan of action and feel so much better. I pray for a good doctor's visit for you this week!

lks1's picture
lks1
Posts: 1
Joined: Mar 2013

Hi Ciri, I am also new to this forum, but not new to follicular lymphoma.  I was diagnosed in June of 2009 with stage 4 lymphoma.  The beginning is a very scary time.  My "treatment" is to do nothing at the moment.  Its called watch and wait.  Its kinda hard to grasp the idea of not doing anything knowing you have cancer.  Its hard for friends and family also.  If you aren't presenting with any B symptoms and its not bulky, then WW is a good option.  I think of my cancer (since its not really curabable) more as a chronic disease. Try to stay positive for yourself and for those kids.  Now is not the time to give up. Exercise, eat healthy, stay positvie and listen to your doctor.  Hope all goes well for you.

Laura

Machir
Posts: 32
Joined: Mar 2013

Ciri I am sorry to hear about your diagnosis.  It is scary.  I was 45 when I got diagnosed follicular NHL.  I remember thinking about my three girls and praying that I would live long enough to see them all graduate from high school.  That was almost nine years ago.  They've all graduated from college....two of them are married.  There is great hope for you to live and experience all that you used to take for granted you would have.  I'll be praying that you find that to be true.  As for the treatable but incurable aspect I'm back on that journey now.  I found out I had relapsed six months ago.  Treatment last October.  Scan this Friday to see how it's going.  Emotionally taxing, intellectually I believe I'll get back into remission.  They can make it happen.  Get a doc you trust.  Take all your meds (I'm particularly fond of the tranquilizer before scan meds they gave me).  Let people help you.  Get rest when you are tired.  You can do much of what you are used to doing while getting treated but when you are really tired you should rest when you can and that means let the people who love you help you with some of the chores.  Ciri there are days when people tell me "I just know you are going to be fine" and hearing it makes me angry because dealing with all of this sucks and sometimes it's hard to stay positive......but you know what?  I believe you will be fine.  I'll be praying that you will be.  God bless.

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