New member....new to NHL...new to chemo...so many questions ???

[Ralbright89]

Hello everything, I'm excited to have a community of people to talk to. I need support and am happy to offer whatever I can provide. I was diagnosed in 9/2016 with Grade 3a follicular lymphoma of lymph nodes of multiple regions. Scared the crap out of me, as I've never had anything wrong with me, and cancer has never surfaced in my family. I have reason to believe it was brought on by 1 long year of intense stress - not sure if possible, but that's all I have. I was put on the "wait and watch" schedule until just this month when my lymph nodes seemed to take on a growth spurt.

My Dr. said "I think it's time".....and with that I started my first round of chemo this past week using Obinutuzumab / Bendamustine. Just getting thru this first 2 days, kicked my butt for about 3 days. Crazy fatigue paired with nausea. I'm getting ready to proceed weekly for this month with the O drug...then just 1 round of both every 28 days.

I was given nausea meds....but didn't do much to help my overall feeling. Never threw up, just felt useless for those 3 days....laid in bed all day basically.

I need to know if there's something I should do to better prepare for this next visit and thereafter. Anything I can do ahead to help the "after" result. I'm really beefing up on the fluids...but what about food. Should I eat a big meal? or light meal? or certain foods??? I need to make this next round a better experience.

Does it get better? They are loading me up this first month, so I have to go weekly - that scares me. I can't continue to be down for 3 days each time.

Any tips or advice anyone would like to send my way would be so greatly appreciated.

[Shar0n Volunteer]

Hi Ralbright89, Welcome to NHLFriends ! Sorry to hear that you had to go into treatment so quickly but hopefully you will achieve a good remission from it. None of us knows how long we really had the illness before diagnosis and it can often have been there a long time before it causes symptoms.

Mine was discovered early and by accident in 2014 and I'm still on watch and wait with no treatment yet. There are a lot of websites with good information that you may or may not want explore at this time:

One with good factual and statistical info is:

Cancer Research UK cancerresearchuk.org/about-...

Another good site is Robert Miller's Lymphoma Survival which has medical,scientific research and other helpful info not found elsewhere

lymphomasurvival.com/

That site is subscription based and specifically aimed at follicular lymphoma patients but has a lot of interesting research which may be generally useful.

As regards dealing with chemo side effects, I am sure others will chime in as there is a lot of experience here and we have a wonderfully supportive community. Good luck with your ongoing treatment and stay strong .

[Ralbright89 in reply to Shar0n]

Thank you so much for the info....I do appreciate and will check out.

[Gailbarnes]

You said, your Dr said you were ready when your lymph nodes took a growth spurt. I'm wondering, I am just getting a hematologist . My lymph nodes are already huge, I can't hardly bend my arms, the nodes are so big on the inside bend of my arms. Multiple nodes swollen, even on both ribs. The one on my right arm pit is 60mm × 10.5mm, clavical is 11mm×5mm, etc. I am curious if they will do something now or wait. Like you, I need all the information I can get. This is a great group of kind people. GOD bless you, Ralbright89

[Ralbright89 in reply to Gailbarnes]

Hello...you sound like you're at the same point as me. I think they wanted to monitor growth possibly...is why they said I could wait. But also mentioned that it was my decision. If they are bothering me or causing issues...etc. The chemo would just completely reduce their size and put me into remission basically. Please keep me posted. I wish you the very best.

[Gailbarnes in reply to Ralbright89]

I pray they put you into remission permanently. That would be great,! I've taken care of so many family members til their last breath, all types of cancer. It scares me to even hear the word cancer, all theirs were too late. Ii have heard several say, this is the best to get, if you get it. I just wish they'd get me in, my Dr said he wanted me in right away, but his nurse doesn't get in a hurry about anything! I'm praying for everyone on here, I know this is a mental fight also.

[Ralbright89 in reply to Gailbarnes]

I'm struggling with your nurse situation. They got me in with urgency when I had just a small lump...stay on them kiddo. You are that important.

[Gailbarnes in reply to Ralbright89]

Oh, I am staying on them. I called again today and got the answering machine. I wonder how fast they would get me in if it was their mom. Lol he wrote me nerve med. And it never got to me from the nurse, he had to write it again. Crazy isn't it. Hope you have a great night, my friend.

[jmcobb50 in reply to Gailbarnes]

I have been on W&W since August 2015 Stage 3a. I did get a 2nd opinion from a Follicular Lymphoma specialist who agreed with W&W. would recommend a 2nd opinion for any cancer treatment but particularly with NHFL.

[Ralbright89 in reply to jmcobb50]

Thank you for sharing.... I pray you remain on W&W.....going thru this chemo sucks.

[Super60 in reply to Ralbright89]

It's been eight years and I was was told I am off the W&W list last month. I did not fare well with chemo.I ended up in the hospital after my treatment for five days then I got severe gout in my foot! Eat what your body craves and try to drink lots of liquids.I ate a lot of bland food at first only because that is what I craved.It took me a long time to get my energy back and I am still waiting for it lol. It might be my age 61.I hope this has helped.

[DebsW]

Hi there, this is also the first time I've posted so hope my experience can help. I was diagnosed with osteolymphoma last year with the rogue Bcells having taken up residence in my spine. I had 6 cycles of bendamustine and rituximab and was very sick with both nausea and vomiting. Tried every anti-emetic and nothing seemed to help except eating little and often. I found ice cream and lollies were amongst the few things I could bear to eat. Although each cycle was slightly different the nausea and tiredness always arrived and like you I had to take to my bed. If I had to advise you I would say be kind to yourself, stay in bed when you need to as your body is being hard hit by the treatment as well as the illness. I know this is easy to say but if you can change your work to allow for this in advance it might be less stressful. I am now in full remission, so hang in there - the treatment doesn't last forever and life seems very sweet and precious afterwards. Wishing you all the best, Debs

[Ralbright89 in reply to DebsW]

Hello Debs...and thank you for sharing your story. You have a very exciting result as well. I'm so happy for you. I'll try to keep my eye on the end result....positive attitude i know is critical. Thanks for the ideas as well regarding the ice cream etc...i am starting my list for the next round.

[DebsW in reply to Ralbright89]

Positivity is great ....sometimes though it's a relief to have a huge rant about how unfair it is, how dreadful you feel, what the future holds etc etc!! Shout it all out either to a friend or on this site then move on back to positivity. At times I felt everyone kept talking to me about being upbeat and since that's how I am naturally it was fine but it could also feel like a bit of a burden, that I didn't want to say I felt terrible and was scared of the future. You just need someone to listen to it all as you get it off your chest then get on with life. When I was having chemo I imagined I was climbing a mountain with my halfway chemo at the top. Once that cycle was over I felt the worst was behind me, that every day was a step nearer to the end of treatment. Good luck with it all and eat as much ice cream as you like guilt-free !

[Hidden]

Hi, I was diagnosed in June 2016, stage 2, grade 2B FNHL. I was treated immediately because I had a large tumour in my abdomen that was in danger of causing problems with my spleen and other organs. I had ignored the swelling for a few months thinking it was trapped wind. Like you I put it down to stress, but I have found no evidence to indicate that this is a cause. I kept myself fit and healthy before diagnosis and ran a lot. After diagnosis, I focused on eating as well as possible, keeping my weight stable and continued to exercise as much as I could. I even saw a dietician. Things get cumulatively worse as you go through treatment but don't worry. You will recover. I am now back at work full-time a year after my diagnosis a d have even been offered a new job. I am now in very good partial remission. I expect to stay like this at least until my maintenance treatment is over (Dec 2018) and beyond. I took sick-leave after my 3rd dose of R-CVP. I should have finished earlier but it has me more time to recover after the last treatment (I got 6 months sick leave).

[Josie2rulrs]

Welcome to our group. There are many of us going through similar problems and it is very comforting to know there is someone to talk to that understands...

[Ralbright89 in reply to Josie2rulrs]

Thank you...i so so agree.

[Josie2rulrs]

I was diagnosed in july of 2015, one node removed...on watch and wait.....

bloodwork stable feeling normal so far....

[Ralbright89 in reply to Josie2rulrs]

Good. I hope you continue to show no changes. That would be such a blessing !!!!

[Josie2rulrs in reply to Ralbright89]

there are a few cases ive seen on this case where they have been stable for a very long time...I hope to be one of them....

[l-al in reply to Ralbright89]

I would like to offer one positives! I was diagnosed first in 1994 when a cyst turned out to be a tumor, NHL. When I left the Dr official CE, I sat in my car and wondered what was next! Was ll, I had to go to the bank and store, so that's what I did! When treatment started I was tired but managed to work. After my last radiation I tied my balloons on a file cabinet and said "see ya!". Stayed home for a week! But I am now stage 3, but last relapse was in 2005, have been fine since. The second relapse caused a stem cell transplant at MUSC. That was a lengthy stay, lots of fatigue but it evidently worked. Since I had infections, off and on all my life, it was determined caused by low immune system. It is a long haul but keep focused, take care of yourself, eat what you like, drink lots of fluids, and keep the faith, in Egerton's. As a P.S., my daughter was diagnosed with the same at age 9, in 1974. She received excellent care at St. Jude's for many years, afterr the first 2 years, we went for checkups periodically. At age 18 she traveler by herself! That was hard, but not as hard has seeing her go through it all, much worse than it was for me. The devastating news is, she died in August 2015 at age 50 of liver cancer, not related to NHL. Still hard to accept but no choice. Again, stay strong, you've got this!!

[l-al]

Sorry fr the misspelling! Erase "Egerton". Have no idea where that came from!

[vanessa3]

Hi ! I have a question would your lymph nodes under your neck swell up ? Before your diagnosis ?

[Ralbright89 in reply to vanessa3]

They did....was actually one to the side of my left breast that was swollen. Was just a lump for all I knew they originally were concerned maybe it was breast cancer. So ran me through all the testing to determine it was lymph nodes

[oncloudnine]

Hi Ralbright89, I was diagnosed 1/2016 with mediastinal NHL. Have been in remission now for seven months. All you can do is take it day by day,and try your best not to dwell on the what if's. Stay up to date on your condition via the internet, ask your oncologist any question you want answered, and take care of yourself. I wish you the best on your journey.

[Bharris23]

How are things progressing for you?