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girliefighter's picture
girliefighter
Posts: 207
Joined: Mar 2013

Hello all,

I am new to the forum and new to the lymphoma diagnosis. I just got diagnosed with follicular lymphoma, I am 36 years old and a single mother of a wonderful 8 year old boy. I am devastated by this, I am a very healthy woman and don't feel or look sick. At the same time, I have a slow growing cancer insidde me, that I have been told I have probably had for years before it has presented itself. While going through all the tests leading up to this diagnosis, I had a pretty good feeling about it being cancer. I kept hoping and praying that it wasn't. I feel guilty for this, but I am apparently vain and was more concerned about losing my hair, than anything else. I am now told by my oncologist that I won't lose my hair, but my cancer is uncurable....what a h@%% of a trade off.!!! I have a very good sense of humor about it, because what else can I do?? These are the cards I have been dealt. I feel guilty for being sick and having the people that care about me worry so much, I feel like it is my fault they worry. There are just some thoughts and feelings that I feel that only cancer survivors or fighters can relate to. My normal has become different, I have found that being sick is a full time job.

Sorry for going on and on, but since I am a single woman I feel like I have nobody to share my thoughts with and don't want to burden my friends or family.

 

XXXOOO CARIE

 

Joemory21's picture
Joemory21
Posts: 40
Joined: Feb 2013

It sucks we all know that. But this is a great to talk with other cancer people. Sorry you had to find us but glad you are here. 

Best of luck

jonathan

anliperez915's picture
anliperez915
Posts: 748
Joined: Sep 2011

Hi Carrie,

Wanted to welcome you to the group,

I'm also 36 and have three kids, my youngest daughter is 5yrs...I have an 18 and 14 yr old boys. My dx is different to yours but to me in the end it's all very similar, we all deal with the emotion, fear, anxiety that comes with a cancer diagnosis. You can read my bio if you click on my pic. Hope you stay with us, this group of people has been a blessing to my life, I have learned so much from all of them and hopefully you will too (They are my therapy) lol! 

Sincerely,

Liz

rescue911chick's picture
rescue911chick
Posts: 55
Joined: Mar 2013

Hi Carie,

I'm also a single mom, I have 4 kids ages 14-21 and I just turned 41. I'm still in the diagnosing process, but I know exactly what you mean when you say you feel like you have nobody to share your thoughts with. I've been on my own for quite some time & I'm a pretty independent person so it hasn't bothered me. But going through this with nobody to "hold my hand" so to speak kinda sucks. I also know how it feels to be sick but not "look sick".  I was diagnosed with RA in 2000, it was extremely bad at first but hasn't been active for a few years now. It's definitely a disease that nobody can see & there are some pretty rude/ignorant people out there.  This group, however, is filled with people who are so encouraging & uplifting, and it helps a lot so share share share! Post when you need to vent. They will help you through it just as they have helped me these past few weeks. They are a blessing. Sending thoughts & prayers your way!

Sherry

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

Carrie,

  First of all welcome to this site. I also have follicular NHL. Been in remission since late 2010. Wondering what stage you are and grade you have. The stage doesn't seem to matter. It is all treated basically the same. There are people here that feel the same way as you do, but don't feel that way. You said it when you said this is the hand you have been dealt. It's not your fault with this diagnosis. Yes, you have a very slow growing type of cancer. We can be fortunate for that. They are coming out with new tretments all the time. I posted a thread yesterday about a discovery at Stanford about a treatment that kills all cancer cells it comes in contact with. This is some great news about progress in treatment. Can you believe I only got a couple of responses.

  Back when I first started posting, almost 3 years ago they were no where this far in cancer treatment. I can't begin to tell you the drugs they have developed since then. We have to be thankful we have a slow grower and not an organ cancer. I have read where until developement of the CT and PET scans that can pick up these large lymphnodes it was passed over. There is no relling how many thousands of cases were just ignored and people lived the rest of their lives with lymphoma and never even knew it. I know the number of cases diagnosed have soared since the 90's. Probably because of the higher developement of these scan machines. I think they are closing in on a cure, but just not fast enough for me anyway.

  Hang in there and things will get better as time goes on. John  

girliefighter's picture
girliefighter
Posts: 207
Joined: Mar 2013

John,

Thanks for the warm welcome...I am unsure of my stage and grade still. I just had my PET scan this morning and still will have to have a bone marrow biopsy. I know I am atleast at stage 2 due to lymphnodes in both sides of my neck being affected. My oncologist said she would not be surprised that it would be stage 4, since our type of cancer starts in the marrow basically. I get my med port put in on monday. not sure when chemo will start but I know I am getting CVP+R for atleast 6 cycles of once every 3 weeks. I am scared senseless right now, I was told that NHFL is NOT cureable and is known for having reoccurances. Trying to get a grasp on it all is overwhelming at times

tall floridian's picture
tall floridian
Posts: 87
Joined: Dec 2011

First -welcome to our group - we are foremost here to share and encourage one another. I'm a 4th stage lymphome patient in remission for about a year now- doing great and growing stronger each day thank God. Know that we share the same anxiety, worries, you name it - so you're not alone in this struggle-we are here for you. The biggest thing in my opinion is to stay strong and positive in your faith and thoughts, taking each day as it comes but always staying positive and upbeat. When I received my diagnoses that I had cancer I stopped in my tracks and said to myself-"ok I have cancer - now I shall fight it with everything I have and put all my trust in God and in my doctor. I believe strongly that lymphoma is treatable and in time overcomeable. Please know that we stand with you in prayer and will encourage you as much as you need us too. God bless you and welcome again - Hugs- Steve

illead's picture
illead
Posts: 505
Joined: Aug 2012

Hi Carie,

     Bill and I welcome you too.  We ditto everything that has been said.  We go on with our lives knowing that there are new things being found or developed for Lymphoma all the time.  It helps us keep positive.  This site will help you keep going even when you get really down (and we all do).  We have some friends (another couple).  Elaine had breast cancer yrs. ago and is still dealing with flare ups.  We went to the Virgen Islands a few years ago and our "saying" for the trip was, referring to our husbands, "Oh cabana boy.....blah blah blah".  Bill is in remission a year from Mantle Cell lymphoma and we found a new saying this trip...."Bill and Elaine don't have to do anything, they have cancer"  Then of course we all get a big laugh.  Keep the positiveness and enjoy this great group! 

Our thoughts to you, Bill & Becky

NANCYL1
Posts: 228
Joined: Jun 2012

Carie:

I just read your post and it seems that we have the same form of Lymphoma.  Mine is called follicular, B Cell Lymphoma (mild).  In January, 2012 I went to my internist for a regular checkup and blood test.  She found that my white cells were high, and sent me right away to a nearby Cancer Center to meet with an  Oncologist.  After a number of tests: CT Scan, PT Scan, Endoscopy, blood tests and finally a Bone Marrow Test, I was diagnosed as above.

I was in a state of denial until the diagnosis.  I have also been told by my Oncologist that I will not lose my hair.  I think that is the "last straw" for women in this terrible situation.  I am getting Rituxan infusions:  one set every six months for two years.  The end of this year will be two years.  He tells me that I am doing well; my platelets, white cells and red cells are now normal.  I too have been told that you cannot cure it, but you can live with it.

I have found that people who have not walked in our shoes do not apparently know what to say.  This board is a good place to be.

Please let us know how your are doing.

Nancy

 

 

girliefighter's picture
girliefighter
Posts: 207
Joined: Mar 2013

Nancy,

I believe mine is the Follicular B-cell Lymphoma as well. Not really sure that it all makes sense to me yet...lol...The more research I do, the more depressed I get.. I have also read that it isn't cureable, my oncologist actually told me that @ time of diagnosis. How was the bone marrow biopsy? That is my next test and I am NOT looking forward to it.

I was wondering if you suffer fromany symptoms? I look and feel very healthy, excluding the fatigue makes me feel like I have narcolepsy at timesWink

It seems very common on this board for people to be placed on "Watch and Wait", I however will be starting CVP+R treatments very soon. They are one every 3 weeks for atleast 6 cycles. Getting my med port put in on monday and am very apprehensive about it, I am so tired of being poked and prodded already and I am only one month into this so far. everything is moving so fast for me.

Keep in touch,

Carie

NANCYL1
Posts: 228
Joined: Jun 2012

Hello Carrie:

I look OK, but do have some fatigue.  Wonder whether it is from pills or just what.

My bone marrow biopsy was the last test I had before the diagnosis of Lymphoma.  My Biopsy was in back,  in my hip.

I was given a couple of pain pills before.   It was bearable, but if I had another, I would ask for a light anesthesia.  The oncologist said that the anesthesia can only be used in a hospital,  and the Cancer Center I go to is not a hospital.

Keep in touch.

Nancy 

NANCYL1
Posts: 228
Joined: Jun 2012

Hello Carrie:

I look OK, but do have some fatigue.  Wonder whether it is from pills or just what.

My bone marrow biopsy was the last test I had before the diagnosis of Lymphoma.  My Biopsy was in back,  in my hip.

I was given a couple of pain pills before.   It was bearable, but if I had another, I would ask for a light anesthesia.  The oncologist said that the anesthesia can only be used in a hospital,  and the Cancer Center I go to is not a hospital.

Keep in touch.

Nancy 

girliefighter's picture
girliefighter
Posts: 207
Joined: Mar 2013

Nancy,

Tomorrow is the day I am dreading...Bone Marrow Biopsy...I am terrified. The worst part of all of this stupid cancer crap is

the anxiety it causes, not knowing what is next.  I am having it done in my oncologist's office, but they prescribed me

some Ativan to take tonight and tomorrow before, they also said she will numb it before...Here goes everything...lol

 

Thanks so much,

Carie

NANCYL1
Posts: 228
Joined: Jun 2012

Carie:

I have a prescription for Lorazepam (the generic for Atavin.)    It does relax me.  Once in awhile I take it at night if I cannot get to sleep and it always puts me to sleep. 

I had pain pills for the biopsy. 

Too bad we must go through this B.S. 

Get back to us.

Nancy

 

allmost60's picture
allmost60
Posts: 3163
Joined: Jul 2010

Hi Carie, and "Welcome"....

 I am 62 with FNHL-stg3-grd2-typA-Dx 6/10. Your right...things move really fast once you get started and it can be very overwhelming. I had a bad experience with my BMB, but also my Onc had to try 3 times for a sample, which rarely happens. Just make sure you take your sleepy pill/anti anxiety at a time which will cover the whole procedure. I had 6 rounds of CVP-R in 2010 and then did 2 years of Rituxan maint infusions every other month. Finished that in Feb 2013. Now I'm waiting to get my CT scan on Tues and see if I'm FINALLY considered in remission.(knock on wood)Smile! You will find so much help here with this wonderful group of people, so keep coming back! Let us know how your BMB goes tomorrow. Prayers coming your way....Much love...Sue

(sorry for the late welcome...been a hell of a month for me, but it's getting better now) Been sick twice with sinus infection and ear infection and then had a bout with shingles in between...UGH!

girliefighter's picture
girliefighter
Posts: 207
Joined: Mar 2013

Sue,

It's  to hear from you, I am sending you healing strength...So sorry you had those stupid shingles and sinus infections ( they seem like childsplay) compared to everything else you have been throgh.

Had my bone marrow biopsy today, with Ativan 1mg and some shots of numbing magical stuff, it was ok. Lots of problems not being able to get through my thick hard bones and then something got stuck inside me...lol..I am always causing trouble.

Looks like I a dealing with NHFollicular Lymphoma Stage 4, grade 2, A...

First treatment CVP+R will be in a week.

I had an MRI today, due to the fact that I have been having migranes and blurry vision.

Got my PET Scan results today, still a bit confused on all of that.

Praying for you....and knockin that wood

Carie

allmost60's picture
allmost60
Posts: 3163
Joined: Jul 2010

Hi Carie,

  Be sure to ask any questions you have about the CVP-R treatment...as John and I both did that regimen. Our cancer is the same except I'm stage 3...no bone marrow involvement. We will be here for you, all the way! Love...Sue

 

girliefighter's picture
girliefighter
Posts: 207
Joined: Mar 2013

Sue,

Thank you so much...My first treatment will be in about a week or so, I have so much anxiety. My Onc said it would be an all day experience. I don't really know what to expect, I am told the predinsone is awful and will make me gain tons of weigh. Onc said I woldnt lose my hair. I am wondering if I will be able to work while going through treatments?? I am a manager at a retail store and am required to work an 10 hour shift, at the same time I do lots of physical work (carrying kayaks, climbing ladders, lifting and moving heavy boxes). Any tips that you would be willing to provide to make this any easier/normal for me would be greatly appreciated. I have an 8 year old boy that takes alot out of me already.

I am in the process of trying to summon my "Warrior Spirit"Thanks Sue

Carie

allmost60's picture
allmost60
Posts: 3163
Joined: Jul 2010

Hi Carie,

 I pulled my paper work from my first day of treatment and I can tell you how my clinic did me, but remember...it may not be EXACTLY the same for you....it will give you a general idea. My Onc had me take my prednisone(60mg) at home 1 hr before coming in to the clinic. I had chemo on Tuesdays, every 21 days. My usual schedule was 8:00 a.m blood draw...8:15 Onc visit...8:30 chemo. I NEVER "started" chemo right at 8:30...usually took at least 45 minutes of prep and pre-meds before the chemo drip actually got under way. My pre-meds were: 2 tabs tylenol-1 mg lorazepam-50mg benedryl. About 15 minutes after pre-meds were given they would start the Cyclophosphomide 1200 mg IV infused over 60 minutes. Then they would slow IV push the 2 mg Vincristine over 1-2 minutes. Then comes the Rituxan which they start "very" slowly and gradually increase each hour as long as there is no re-action. I only had a slight re-action immediately after starting the R...my throat started getting tight...so they stopped the drip added more benedryl and 15 minutes later restarted and I was fine. Never had a problem with the Rituxan from that day on. My first round took 8 hours. The second round took 6 1/2 to 7 hours and thats pretty much where it stayed for each infusion. As far as the prednisone goes...well...me and pred are enemies. It really messed with my head and breathing...couldn't sleep...jittery...moody...you name it I felt it. Now I didn't gain weight from it, nor did I lose my taste buds during treatment. Certain foods tasted weird, but thats about it. I did experience neuropathy in a few toes and fingers around the 4th treatment, but with in a month or two after finishing chemo all feeling came back. You WILL be tired Carie,and with each round more tired! I don't think I could have worked during chemo. Others did and do, but personally..I could not have. Remember...I'm retired and was 59 when I had my first round of chemo, so with you being younger, it may go a whole lot easier. What you need to do is continue coming to the group during chemo days and as questions come up, we will be right here to walk you through. That's what, John, Beth, Lisha, Maggie,Donna Vinnie and many, many others did for me. I'd get all freaky and they would calm me down and get me through it. Feel free to e-mail me also. I can't think of much more right now, but you just reach out and we will be here. Hope this helps....Love...Sue

(I'm still on prednisone for this nasty sinus infection, so I hope all of this makes sense)...ha! Next weekend I'll be more level headed!  Smile

 

girliefighter's picture
girliefighter
Posts: 207
Joined: Mar 2013

Sue,

Bless your heart for going through all that trouble for me. I appreciate it more than words can say. Its funny how alone one feels while going through this, even being surrounded by family and friends. I find solace when I come here, to this board. It makes things so much easier to know other people's struggles and how they got through, plus it gives me a sense of hope. I have had so much anxiety about every step of the way. I survived the bone marrow biopsy, with the help of some LorazepamWink.

  I am hoping that your sinus stuff clears quickly for you, so that you can say goodbye to your nemesis prednisone. I feel so bad for anyone who even gets a headache nowSmile

xxxooo

Carie

boy34
Posts: 20
Joined: Aug 2011

Hi Carie,

 

Im a DAD of 3 with Follicular NHL Stage 3 grade 1.5 (slow Growing) I was diagnosed just about 2 years ago. Docs decided not to treat me. It took me just about a year to get over the fear and try and live a normal productive life, without letting this disease get the best of me!! The best thing you can do for yourself is to stay positive and not let the stress get to you!!  Can I ask why your going to recieve treatment and not the Wait n Watch?

girliefighter's picture
girliefighter
Posts: 207
Joined: Mar 2013

Hello,

I am not sure why they are treating me instead of watch and wait. I know that i was told I have probably had this for years. I just had my PET scan today, so I don't even know what stage I am yet. I know I am atleast at stage 2, due to the fact that I have lymph nodes on both sides of my neck affected. The swollen lymph nodes in my neck have been causing me to have migranes and trouble swallowing food. Though I don't suffer from any of the B symptoms, I just have fatigue. I am trying to keep living  "normal life", I have however found that my "normal" isn't the same as it was a month agoTongue Out

hiccup (not verified)

I'm so sorry to hear of your diagnosis.. but I'm glad that you have arrived here. There are plenty of wonderul folks to talk to about this. I do not have the same diagnosis as you, so I can't help you much in that department. One thing I can say is, the diagnosis of cancer will set in, and you won't feel nearly as devistated as you do now. It sort of becomes a part of life over time, and you may find it makes you more thankful for each day. It all depends on how you look at it, I suppose.

 

Anyhow, I'm glad you're keeping a good sense of humor about it. That seems to be half the battle :)

I'm so glad that you get to keep your hair.. that's a huge plus Cool

-Nathan

girliefighter's picture
girliefighter
Posts: 207
Joined: Mar 2013

Nathan,

I agree, single chicks need their hair!!! never in my life would I have thought that I would be celebrating a chemotherapy that wouldn't make my hair fall outSmile.  I guess my new "normal" is totally different that it was a month ago. I just feel like I am going through the motions, it all seems surreal.

 

Congrats on your recent "RELEASE" btw...looks like you have been through alot. I a sure you hear this all the time, but I am gonna say it anyways...you are soooo young.

Nathan you have the heart of a WARRIOR....

jimwins's picture
jimwins
Posts: 2002
Joined: Aug 2011

Welcome to the "Land of Lymphomaniacs" - to borrow a word you coined in another post :).  Nathan is right about having a sense of humor.  It will help you through this and it also helps us :).  Sometimes a smile or chuckle can make all the difference and of course HUGS also.  I often say humor and attitude are free weapons in this war - I'd say you have a well stocked arsenal :).

Again, welcome to the group and big hugs going out to you,

Jim

boy34
Posts: 20
Joined: Aug 2011

Carie,

Your Diagnosis sounds very similiar to mine!! Hopefully your pet scan will give you a good road map in how they move foward with you. Tiredness is a big issue with me too! I would seek other opinions if possible. Have a great weekend

 

Chris

boy34
Posts: 20
Joined: Aug 2011

Carie,

Your Diagnosis sounds very similiar to mine!! Hopefully your pet scan will give you a good road map in how they move foward with you. Tiredness is a big issue with me too! I would seek other opinions if possible. Have a great weekend

 

Chris

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