CSN Login
Members Online: 19

Hello, New Here !

Jace974's picture
Jace974
Posts: 14
Joined: Sep 2013

Hey ! New here. Reading your posts helps with a lot of questions I have. Thanks ! I am Jason, 40 years old, diagnosed with stage 3B FNHL in May this year. I just did my third round of Bendamustine/Rituxan. So far little side effects. I go Tuesday for my first PET scan to see if its working, kind of worried !? 

If its doing ok I am supposed to receive 3 to 5 more rounds and go on maintenance rituxan, if not, R CHOP. 

Anyways thanks for letting me talk and thanks for all your info and experiences. One thing I struggle with already is the thought that this probably will never go away for good.... which sucks ! How do you guys deal with this? How do you keep your mind off the cancer coming back ? Suggestions?

Shoopy
Posts: 210
Joined: Jul 2013

Thanks for joining.  I joined in May when I found out I had DLBCL Stage 4B.  You are wrestling with the same question we all do.  I hate to tell you there are no easy answers to it.  There is no silver bullet that takes your mind off cancer returning.  A number of people here will speak about visualization, meditation, etc.  Those things really don't work for me. 

For me, I tend open the laptop and do some work.  I find it helps consume my mind.  Also, I talk to people...I'm lucky enough to have a great support network for friends, former coworkers, family, etc.

Lastly, and believe me I'm not overtly religious, but I have managed to pray a lot and turn my worries to the Big Guy.  I will admit...it has taken a while.

I'm looking forward to other people's replies.

Karl

Jace974's picture
Jace974
Posts: 14
Joined: Sep 2013

Thanks Karl. How is your treatment coming along? What are you doing/how long/side effects? 

Its prob going to take some time to adjust to that I am sure. Right now I kind of just lose myself in the computer for hours, read some books, walk around the block. lol.

I also have a great support group of family/friends which helps a lot. Prayer, yes. I am not overtly religious either. Its an adjustment for sure.

I am more worried about when this parts over and I'm back to "normal" life, working and stuff, just doing rituxan maintenance. Then after that.... How often are you supposed to go to doc? Do you just go if you feel bad? Its going to be a long road I feel (already is) .... but I'm ready for the fight ! 

Katie_2006's picture
Katie_2006
Posts: 10
Joined: Oct 2010

You will probably have scans and doctors appointments every 3 months then 6 months then a year. I had NHL stage 4. I had R-Chop. So if you have any question just ask. 

Jace974's picture
Jace974
Posts: 14
Joined: Sep 2013

How are you now Katie? How long ago? I have a ton of questions. How old? How was R chop? ETC ETC ETC.....

Katie_2006's picture
Katie_2006
Posts: 10
Joined: Oct 2010

 I am doing good. I was diagnosed in 2006 .I have been in remission for 6 years now.  I was diagnosed when I was 20. I am now 27.I had 6 rounds of chemo (R-Chop). I had a infusion port put in. but I think the worst part of chemo was the most highest steroid they make I had to take 5 every day the week of chemo it made me crazy.  I had chemo every 3 weeks. Chemo kicked me down for about 3 days I did nothing but slept. I lost my hair but it was ok because I know it would grow back. After chemo I had radiation I had 28 rounds of them.  Don't know what else you want to know. But i'm here ask any questions you have. Smile

Jace974's picture
Jace974
Posts: 14
Joined: Sep 2013

You're amazing Katie, SOOOOO glad you are doing well !

Katie_2006's picture
Katie_2006
Posts: 10
Joined: Oct 2010

 I am doing good. I was diagnosed in 2006 .I have been in remission for 6 years now.  I was diagnosed when I was 20. I am now 27.I had 6 rounds of chemo (R-Chop). I had a infusion port put in. but I think the worst part of chemo was the most highest steroid they make I had to take 5 every day the week of chemo it made me crazy.  I had chemo every 3 weeks. Chemo kicked me down for about 3 days I did nothing but slept. I lost my hair but it was ok because I know it would grow back. After chemo I had radiation I had 28 rounds of them.  Don't know what else you want to know. But i'm here ask any questions you have. Smile

Shoopy
Posts: 210
Joined: Jul 2013

I compare this to riding a roller coaster blindfolded.  I started with the traditional first line treatment of R-CHOP but after two treatments the doctors said it wasn't working.  I finished my third treatment of R-DHAC about 10 days ago.  Assuming my PET scan shows that I'm clear, I'll proceed to prepare for a stem cell transplant in November. 

Side effects have been minimal for me.  A bit of fatigue and some moderate diarrhea but its contained to days +5-+8 after chemo.  I will say the side effects seemed to last longer and a tad worse this last time.  Probably the cumm effects of chemo.

It sounds like you're doing the right things.  You're also experiencing something that we've talked about on this board "How do you start to trust your own body signals?"  I would recommend the following: When in doubt--call the doctor.  Also, keep a journal or log...one that you note how you feel each day.  Keep track of your blood work in that journal/log.  After some time you will start to notice patterns and it will start to ease your mind.

For me, I know that around +9 day after chemo my neck will start to feel like the lymph nodes are swelling for about 2 days.  It had freaked me out until the NP told me that it's normal for DLBCL lymph nodes to flare after chemo.  The odd thing...is that the next two days my spleen will feel odd...then it moves to the nodes on my groin...then gone.  I would have never recognized the pattern without keeping track.

Karl

allmost60's picture
allmost60
Posts: 3162
Joined: Jul 2010

Hi Jace,

  I was diagnosed with FNHL-grd2-typA-stg3 back in June of 2010. I did 6 rounds of CVP-R and then 2 years of Rituxan maint. I finished my maint in Feb and had a CT scan in April. Everything looked good and I'm in remission. I still have my port in and go every month to get it flushed. My Onc wants to leave it in a few more years as long as I don't have any problems with it, which I haven't had, so far. It does remind me of my cancer, but on the other hand if my cancer should come back, at least I won't have to have a new one put in.Thinking about "when" or "if" your cancer will come back is perfectly normal. I get anxious sometimes, but most of the time I just try to take each day one at a time and enjoy it as best I can. I felt pretty good during my 2 years of Rituxan Maint. The first week after my infusion I felt a bit run down and overall achey, but nothing unbearable. I did my infusions every other month. The off month with no infusion, I  usually felt really good. Good luck with your scan on Tuesday and please share back your results. You will find a great group of people here to help answer any questions you have.  Best wishes...Sue age 62  

jimwins's picture
jimwins
Posts: 2000
Joined: Aug 2011

Hi Jace and welcome to the group.  Sorry you have to be here but you will find wonderful, supportive friends here.  You can come here with questions, to vent, share the good and bad and humor is also allowed :)! And when you are up to it, you will find supporting others will be helpful to you also.  It will help if you fill out information in the "about me" section but is certainly not required.

You can read more about my journey in my "about me" but summarizing, I was diagnosed with DLBCL (Diffuse Large B Cell Lymphoma), went through 6 rounds or R-EPOCH (interrupted by surgery)  and am very near the 2 year mark in remission!  I have been very fortunate and am grateful.  

Adding to what others have said.  Anxiety and "scanaxiety" will become a part of what is referred to as the "new normal" after cancer.  At this point, if you are not on anti-anxiety medication, I strongly recommend it as it really does helps quieten the "worry monster" from a roar to a meow/purr :).  One thing I say often to folks is that attitude and humor are free weapons in this war - use them.  It helps to "laugh in the face of your enemy" and laughter really helps with the stress this experience brings.  Another thing that helps is to celebrate milestones in your journey (1/3rd, 1/2 through treatment, etc.) and be good to yourself.  You are processing many things and you also have to allow yourself to "process" and that means it's okay to cry, get angry, etc. - just don't let it dominate you.

You are not alone here, Jace.

Big hugs and again, welcome to the site,

Jim

 

 

 

 

Jace974's picture
Jace974
Posts: 14
Joined: Sep 2013

Thanks guys ! I'll keep you updated. 

Rocquie's picture
Rocquie
Posts: 478
Joined: Mar 2013

Welcome to the group. I have found participation here very beneficial on many levels and I hope you will too.

From the sampling of replies to your post, you can already tell that in living with and being treated for lymphoma, just like all other aspects of life, everyone is different. For everything I have experienced, there is usually at least one other person with the same. Others have completely different experiences. All together, I find it very helpful and comforting. Sometimes I can help someone else and that helps me in a different way.

How to deal with the mind aspects of living with lymphoma. . .

I think that is the BIGGIE for all of us. I have been in remission for 7 months now and I just had my 3rd Rituxan maintenance. I feel good most of the time but I do get "Bad Mind".  Sometimes it is harder for me to shake than others. I have a number of personal interests, such as photography, cooking, reading. I may have to jump from one to another to try to get my mind engaged. Sometimes, I just stare out the window.

Mostly, I try to tell my mind to "hush and leave me alone". I try very hard to remain positive because I strongly believe in the health benefits of doing so.  

Good luck with the scan on Tuesday. Let us know how it goes, OK?

Hugs for now,

Rocquie

 

girliefighter's picture
girliefighter
Posts: 206
Joined: Mar 2013

Jace,

I too struggled with the idea of my Cancer never going away and still do really . One thing that made it easier for me to deal with was making it through my treatments and realizing that if it isn't bothering me/ making me unable to do my daily activities why should I allow it to have power over my thoughts and quality of life. The cancer I have is found in people over 60 generally, so they don't have much information on life expectancy yet and since the treatments keep getting better and better it is hard to say how long someone can live. Well anyway my point is, you will find a way  that is all your own on how to deal with it or atleast be able to try and accept it. I am only 37, just have one child and have never been married..Thinking nobody would want to marry me and that I would never be able to have any other children, that was a major blow to handle .I was scared shitle$$ when I was diagnosed in February and started treatments in March, it is now October and I will soon be beginning my maintenance treatments of Rituxan for 2 years.

I hope treatments are going well for you and that you are growing daily on your journey

XXXOOO

Carie

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network