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new....& in shock

tigersi's picture
tigersi
Posts: 15
Joined: Jul 2005

hello! i'm just diagnosed lymphomma b cell follicular grade 1 not staged yet,so i'll be checking in here to see if anyone's diagnosis similar to mine & what to expect,seeing oncol.
mon....how bad is chemo?..anyone hear nbc news about cancer 'bomb', new research from m.i.t.?
sounds good!...i just hope i'll find the courage that i've found so inspiring on this site.thanks,susan

jcbeenthere
Posts: 19
Joined: Feb 2005

It's a dreadful situation you are in and I wish you the best. I had stage 4 NHL in 2001. Following tumor removal, I went through 6 cycles of CHOP and4 Rituxin treatments between chemo.

I can offer you great hope for a happy outcome because of how far science has progressed and thank God! My brother had same ca and went through a bone marrow transplant in 1994. When I was diagnosised in 2001, my first response was, "no way will I go through what my brother did." My onc assured me that I would not require same treatment as in 5yrs things had changed alot.

You didn't say what chemo you're going to have. Everyone has different reactions and responses. I was told CHOP was the roughest type of chemo at that time. Ican verify it was no picnic! But, it is temporary and again, improvements to make it more tolerable have been made. you will probably put the worst of it behind you with time.
I have not had a recurrence of NHL to this date I just passed the point at which it most commonly rears it ugly head again. My brother is positive and has been for 5yrs or so. He is checked frequently but not treated until it becomes absolutely necessary. He leads an extremely active and full life at53yrs old.

I have had two more totally unrelated primary cancers since then. Melanoma and most recently breast ca. I had surgery, chemo and radiation for br ca. A different chemo (FU5) It is my 53 birthday today and I feel well. I strongly urge you find a support group if you even think you might want to share. Iwas stubborn and in hind sight I should have found one. I wanted to be strong for all the people around me, couldn't fool them.I found the chemo sessions were therapeutic as I sat there along with 5-7 others also rec. chemo.

If someone wants to care for you, let them! Write things down, md visits, appts., notes from discussions You will probably need all this inform. down the line, be it insurance co. or you simply wish to refresh your memory. Take someone with you if possible to appts.

I know you are most likely in a fog, it will clear. I feel the anxiety which I didn't realize was present, and the preoccupation of cancer treatment was a huge factor. Emotionally you will find struggling times, some days just better than others in general. Be strong, as you know the mind is a powerful thing. It can make you or break you.

sorry, I get on a roll and blah, blah, blah.. If you need, you can write me. This web site offers alot of encouragement, helpful hints, etc.

I truly wish you a quick trip down this bumpy road!

tigersi's picture
tigersi
Posts: 15
Joined: Jul 2005

thanks jcbeenthere,sounds like you & brother have been thru the wringer,i'm so sorry.this is a wierd disease and no cure so far for the indolent
b-cell follicular that i have...not yet.
congratulations on your continuing success & your brothers...i'm having bone marrow biopsy fri.& wonder if you had one,& any advice? thanks again
take care

nikkismom's picture
nikkismom
Posts: 18
Joined: Dec 2003

hi there, my name is Charlene. In 2003, I was dignosed with Non hodgkins lymphoma, stage 4. b- cell follicular. The chemo I took was chops and rituxan. Just as long as they gave me the right nausea medicine (Zofran) I did fine. So what I lost my hair, small price to pay for life.My husband even shaved his head when I lost mine. I know you are going to think I am nuts saying this, but the main thing that helps you thru all of this is your attitude. Attitude is alot. Faith in God also. You never new your friends cared so much about you. I had tumors in liver, ovaries , up and down aorta, in kidney and the bones. They drained 4 1/2 liters out of my abdomen. As you know different people react different way to medicines. always always ask questions. I kept a journal, through it all, I love to look at it. Have faith and just your doctor, if you have a good one. Mine is so awesome. I did only really get sick once from chemo: I got a side affect from chemo, I got what they call pcp pnuemonia. Kind of nasty but got thru it. In Oct I will be two yrs in remission, I am also taking some preventive maintenance chemo but it only makes you a little tired that day, but that is all. You can also meet some new friends with the same as you. anyway, I will stop rambling on, God Bless and you are in my prayers, please keep in touch. sorry for the rambling again.

tigersi's picture
tigersi
Posts: 15
Joined: Jul 2005

hi nikkismom
thx for writing,it helps a lot to know what we might be facing and some tips on getting through
this.i see w/ stage4 they moved ahead quickly,
must have been very tough times.your husband shaving his head was very touching,and funny{haha)
i'm not sure what's next, but your remission is fantastic,& there's always hope w/new treatments.
though i'm praying u won't need them! appreciate
your answer as seems we have the same dx.lets def. keep in touch....p.s.telling your exper.is
not rambling,believe me,i'm all ears!
susan :-}

nikkismom's picture
nikkismom
Posts: 18
Joined: Dec 2003

I am praying for you everyday, I hope we can keep in touch. Charlene

rodgerr1
Posts: 4
Joined: Oct 2005

So nice to read your supportive story. I was just diagnosed with NHL and have an appointment with the oncologist in 30 minutes. I hope to be part of a trial and look forward to celebrating remission. Rodger from Greenville, SC

califdeb
Posts: 4
Joined: May 2005

Hello,
I was diagnosed with stage 3 b cell follicular in 2/24/05. I was treated with 6 cycles of chop w/rituxin and am now in remission. I worked through my first 3 chemo cycles and stayed home for the last 3. I am not sure if your treatment will be the same based on stage, however,I was told that mine was an aggressive lymphoma and needed treatment right away. Today is just about six months from the day I was told I had NHL. It has been rough, both physically and emotionally. You will receive support from everyone, just be sure you accept what you need and also let people know when you need rest. The biggest issue for me was the fatigue and general feeling of doom. The nausea and other side effects were pretty controlled by meds. Write everything down, because it does get crazy with meds and doctor appointments. I have two boys and a great husband that helped me through this, yet sometimes that wasn't enough. I found reading on the internet and websites where people were going through this almost more helpful. I had a problem sleeping so I was on the internet a lot. You will have the courage to get through this, just know that you can. Let me know if you need any more specifics or support through this.
Deb

tigersi's picture
tigersi
Posts: 15
Joined: Jul 2005

hi califdeb
thx so much for writing.i'm sure it has been very rough for you! i have the indolent type or slow1 i guess,at least so far. today i had a pet and a cat scan,tomorrow a bmbiopsy,unless w/scan i don't need one yet.sooo still don't know stage & treatment plan.and i might get 2nd oppinion on that,if time allows. sounds like you really got them going fast...congrat.for all that in & 6mos!
these boards have already helped me so much.just feeling connected helps when something like this
can make you feel so alone,please keep in touch.
& let me know how its going whenever you're feeling up to it......susan

railroad
Posts: 22
Joined: Apr 2003

My Mom has the "indolent" type and tomorrow celebrates 2 years since her last chemo.She used fludarabine/mitixantrone combo.Best of luck 2u.

tigersi's picture
tigersi
Posts: 15
Joined: Jul 2005

hi railroad
thanks for writing,i'm very encouraged by your mom's results,wonderful!i just found out wedn.
that i'm stag4 w/bone marrow involved,not so good.
willl prob. start treatment soon w/retuxin & ? maybe fludabine?.i will ask about what you mentioned.going 2nd opinion at sloane-kettering
hosp.,supposed to be good,soooo...we'll see....
take care,& let's all keep in touch,very helpful!
thanks,susan

rodgerr1
Posts: 4
Joined: Oct 2005

Susan, I too was just diagnosed with Follicular b cell Lymphoma. I am Stage 4 Grade 1. I will be meeting with my oncologist today at 12:45. Do you have any symptoms such as night sweats, weight loss, etc? I had none of those and still am asymptomatic. I had swollen lymph nodes and went to the doctor and finally after all the testing for everything in the world I had a node biopsy and got the diagnosis. Stay strong and keep your faith strong as well. I am in Greenville, SC. Let me know how things progress. Rodger (rodgerr1)

VanMarshall
Posts: 3
Joined: May 2005

"the bomb" I think that's referring to radio- immuno therapy where the cd20 protein is targeted. Radio-immuno conjugates is another term. Look up "Zevalin" and "Bexxar". Hopefully,if I'm inaccurate, some of the others will jump in and correct. I'm Non-Hodgkins Lymphoma, stage 4, follicullar, 1 year past treatment. Had Navatrone, and Fludara,+Rituxin. Now with Minimal Residule disease. Only problems are persistent low white cell count and anxiety.

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