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NHL FOLLICULLAR AT 60

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Anybody out there diagnosed with follicular around 60 years of age. If yes how are things going for you? It is a scary time no doubt about it.Mine is stage 4 and will be starting r-chop soon.

onlytoday's picture
onlytoday
Posts: 610
Joined: Jun 2010

Hi,
I'm 58 and just got dx low grade follicular b cell. Haven't been staged yet but will check in with you once I know what the plan will be. Very nervous right now because of the scary unknown. Wish I didn't have such an overactive imagination. What are your symptoms?

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

I know what you mean by being scared. I really didn't have any symtoms. I was sent to have a ct scan at my prostate exam. The urologist wanted bladder and kidneys checked for any problems to complete the exam. All was clear except enlarged lymph nodes in the abdomen were seen. It did not bother me at first,till I started to think about it. Then the anxiety stated to set in. I had it checked out and it was follicular lymphoma. I probably had it for years and did not know it. Still would not know unless I had the ct scan done. It is frightening for sure. The imagination can really cause a lot of anxiety I know that for a fact. I was a mess for the last few weeks. Still not 100% about anything. This site has helped me quite a bit. I was staged at a 4 because it has gotten into the bone marrow. My onc tells me it makes no difference because it is all treated the same when it has spread. It is still lymphoma no matter where it spreads too. It is not bone cancer, but follicular lymphoma that is in the bone marrow. How was yours discovered? Did you have any symtoms at all.

onlytoday's picture
onlytoday
Posts: 610
Joined: Jun 2010

Had my first appt today and still don't know anything except that I need strength to be patient! Have a cat scan, pet scan and bone marrow biopsy next week. Getting a second opinion started this week. I have anemia and a swollen groin lymph node as symptoms. My primary care found the lymph node on a cat scan that was taken for something else..

Today the onc found more swollen nodes in my clavical area. I have a lot of discomfort in my abs also so we'll see. I'm really struggling with all of this.

I keep hearing about people getting treatment and what that is like and I know that sometimes with follicular they like to wait to treat. Not sure which sounds worse

This sight feels right to me. Nothing like chatting with people who have experienced what you have.

It's strange, I am always such an optimist and I have to say this is shaking me to the core.I've known for 2 weeks that I have it.

Are they starting treatment with you? I wish you the best.

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

I went to the cancer center in Fayetteville for my first round today. It will be a 2 part adventure. They put the Rituximab in today. It took 6 hours because some people have reactions and they watch us close for that. I did pretty good with it. Tomorrow I go for round 2 of CVP. It should take about 2 hours. Just hope I don't have any reaction to those drugs. I hear they really wear you out. Not really looking forward to that, but want to get this stuff under control. The whole thing is scary thats for sure. yes, you can be an optimist and something like this hits you can really turn the tide. Read all you can on the computer, its very informative. Just don't read too much into some of the articles like I did at first. Be sure to check the dates on the articles, some are rather old. They have come a long way in the past 10 years. Most lymphomas are found by mistake. Mine was found while checking kidney and bladder on routine urology cat scan. Onc told me that 66,000 people will diagnosed with nhl this year. He then said there are more people than that walking aroung who never know they even have it. Scary isn't it. Unfortunely cancer is on the rise, not on the decline. I wish you all the luck and please get back to me with any updates. John

allen8855's picture
allen8855
Posts: 6
Joined: Jun 2010

hi
i can relate to your treatment,I've been through it. going for my 4th round of rituxan in July after another ct scan. Seems like forever in that chair i'm also in chair for 6hrs or so.I was dx with follicular lymphoma type 3 stage 4 in feb 08 done the r-chop.Hang in there.
good to hear from you, this is a wonderful discussion site take advantage of it.

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Seems like the rituxan is holding it for you.That is great. The more I read about lymphoma it seems like they are getting closer and closer to some kind of cure or at least a permanent remission. They just don't like using the word cure when it comes to cancer. I just can't believe how many cases there are out there. There is a cancer for every part of your body, from your head to your toes AND EVERY INTERNAL PART IN BETWEEN. That is NO exaggeration!!!!!

onlytoday's picture
onlytoday
Posts: 610
Joined: Jun 2010

Just thinking about you and wondering how you're doing with the treatments? Hope it's going well.
I'm going for the beginning of a second opinion tomorrow. Next week I have CAT scans, Pet, and a bone marrow biopsy. I also have to see a surgeon because they decided to remove one whole lymph node to stage it.

I am feeling so lousy. I have so much upper abdomen, rib pain. It's just part of me now and it occured to me today that maybe it will finally stop when I get treatment. That was a ray of light!

I will not get staged, get a prognosis or plan of action until July 7. But that'll be here before I know it- they're keeping me busy and I'm still working.

Best to you -let me know how it's going.

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

I had my rituxum on Monday. It was a long day. Got a liitle weak and tired along with a low grade fever. Couldn't pee for over 6 hours and my kidneys started to ache. I kept drinking lots of water and finally the dam broke and I was back to normal and the ache let up. It was the Rituxum filtering thru the kidneys along with some dead cells causing the pain. Yesterday I had the CVP, it only took 2 hours. Everything went well except later in the evening I felt a little dizzy. It did not last long though. Today I got my neulastra shot which is for wbc stimulation. It was not painful at all. Just felt like a bee sting, but not as bad as one. I was fine most of the day till around 8pm and started to feel really tired and a bit dizzy. I guess its the CVP doing its job. Blood cells will continue to drop for awhile then begin to pick up again in time for my next round in July. I do feel a difference in my abdomen. It is not as lumpy and swollen, but is still hard. I check it every night and morning. I can only feel them while laying down. I do feel as though it is working pretty fast.

onlytoday's picture
onlytoday
Posts: 610
Joined: Jun 2010

It sounds like you've had a couple of long days with the tx. What did your docs advise you about work? Are you on disability or intermittent fml? I'm getting staged July 7 so I am not sure what I'm in for yet. I'm glad your abdomen seems to be reacting quickly to the drugs, hopefully that will give you relief. The kidney thing must have been scary!
All the best Cobra. Stay in touch.

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

YES, IT DOES SCARE YOU WHEN YOUR KIDNEYS HURT. ESPECIALLY WHEN YOU ARE ON THE CHEMO. YOU DON'T REALLY KNOW WHAT TO EXPECT. EVERYBODY ACTS DIFFERENTLY.Since the kidneys are so low in the back it is hard to tell if it is that or in the upper hip. Red blood cells are produced in that area as well and with the neulastrs shot I got they told me I may feel some discomfort in that area. Still doesn't tell me if its the kidneys or the hip. It feels a lot better today though. Keep drinking water to flush that area. Don't want any chemo drugs setting there. It can cause irritation in the bladder and kidneys. I know you haven't been staged yet but did they diagnose you with follicular nhl or another type. My abdomen seems smaller and smaller everyday and I hope it keeps it up. I am retired. Several workers were offered early retirement years ago due to attrition and cut backs of the work force.I worked long enough anyway.

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Just checking in to see how you are doing. I had a few rough days but hopefully it will get better with time. All my blood work came back good when I went in to have kidneys checked. Still have that lower back pain. They said kidneys are fine. All my blood counts are up but still feel dragged out at times. They say it is normal from the chemo. Been having discomfort in the lower abdominal area, but thats where the tumors are located, so I guess it is the chemo still at work.
Are you still having the pain in your upper abdomen? It could be the lymph nodes pressing on the internal organs. I never had any pain until I started the chemo. I did have something that felt like pressure,but no pain. If you have any questions to ask the Dr. when you go back make sure you write them down as you think of them. At a time like this you will not be able to remember them.

onlytoday's picture
onlytoday
Posts: 610
Joined: Jun 2010

Glad that your blood and kidneys checked out okay. But sorry you're not feeling so great. Are you able to rest enough and are you walking every day? I really hope you can get some energy back and that the abdomin pain gets better.

I do still have the abdomin pain,my doctor aware. Today I had my left inginual lymph node removed for staging of my lymphoma. I next see my doc on July 7 to see what all the ct test, pet scan, bone marrow biopsy and todays surgery show. Then she'll tell me what the plan is. I then have a second opinion visit the next day!

Ironically I was supposed to begin a 2 week vacation that Saturday the 10th. Right now all is on hold. I signed up for Intermittent FML due to the amount of time I've been taking off lately. That way atleast I can save my vacation time for later, when I hopefully feel better.

I have a new symptom on my neck. There are a couple of good sized tumors there and they are possibly pressing on something and causing stiff necks and discomfort. I'll talk to her ab out it when I see her.

How soon after your diagnosis and staging did they start your treatment?

Take care, great to hear from you with an update. Sending good thoughts and prayers your way.

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

I was diagnosed in April and said it was probably stage 2. They kept waiting and watching and finally decided to do a bone marrow biopsy. That was a thrill beyond compare. It did not hurt but the pressure was terrible. Believe me I ain't nobodys hero. They said it was in the bone marrow,but not that much. Still in there though. 2 weeks later I had a porta cath put in and the next week I started R-CVP on June 2nd for 6 rounds. Been feeling a lot better the past 2-3 days. Enery coming back and pain just about gone. The first 10-14 days after the chemo I felt like I had been beat up and dragged off and on in that time. Go back on July 7th to have round 2. Hope I don't have to go thru all those ups and downs again. Everyone is different so we shall see. The really hard part is the waiting to see what each day will bring. You do learn that it will get better as time goes on. The people on this site become your leaning post and crutches that help hold you up at times. They will be here for you whenever you need them. Keep us posted, John

hilde451's picture
hilde451
Posts: 229
Joined: Oct 2009

I was diagnosed at 60 and had surgery in 04, then did 20 Radiation treatments. Was home free almost 5 years.
At which time last April in 09, I relapsed. And it turned up in my bone marrow. Was told I had stage 4.
Then did 8 rounds of R-chop and two treatments of Rituxan and then Zevalin December 23. It has been a long haul. But just did my Cat scan and it turned out well, I am doing pretty well, have some issues with sore muscles. But that is about all.
I wish you well, best wishes. Hope you let us here know how you are doing. Hilde

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Hilde, I will keep you informed. Thanks for the response and good luck to you. Don't forget to keep us informed as well. John

stell27
Posts: 15
Joined: Jun 2010

How long after surgery did you wait for the radiation? And where was the surgery done on your body? I had a lymph node removed in my groin area and I have been going around getting second and third opinions and I am afraid I am maybe waiting too long before starting radiation. By the time I start, it will be 7 weeks.

hilde451's picture
hilde451
Posts: 229
Joined: Oct 2009

My suregeries were on both side of the neck and cheek. I believe I waited two weeks for the radiation treatments.
But got through them. what did your Oncologist say? Every Oncologist is different.
But you will get through this I just know. Will be praying for you.
Hilde

markstevenvegas
Posts: 11
Joined: Feb 2010

My name is Mark. I just read this string of posts and saw that you had radiation therapy. I'm assuming your radiation was to treat your neck since that was the site of the surgery? I finished R-CHOP the end of April and began 15 rounds of radiation to my neck at a dosage of 3000 cGY the end of May. I just finished a couple weeks ago. The radiation in the neck region was brutal to say the least. My questions for you....I am without any taste buds and only 25% of my saliva. I'm told it will come back in a couple months. How long did it take your taste buds and saliva to return. It's very agonizing that everything tastes like eating cardboard. I have yet to meet/talk to anyone that had radiation to the neck. FYI, my dx was Dec. 09' B-cell Follicular NHL Stage II Grade III Thanks. Mark

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Mark, I did not have radiation, but I had r-cvp and I too lost my taste. It all taste like cardboard and then started to taste like metal . It is getting better after 10 days. So the chemo can cause it as well. John

hilde451's picture
hilde451
Posts: 229
Joined: Oct 2009

Hope this finds you doing well. Sorry I had not seen your post. I am sure by now you should have your taste buds back.
I had mine back in a few months after radiation which was in 04 when I did 20 treatments to my neck and cheek. Then I was home free for 5 years almost.
I was diagnosed with follicular NHL, stage 4. Did 8 chemo treatments last year and did a radioactive treatment called Zevalin in Dec. So the lingering effects of all the treatments makes you wonder .
I go back Sept. 1st. So will see what is going on.
Hope you are doing well.
Hilde

Richsterr
Posts: 34
Joined: Aug 2010

I have pretty much the same thing you have. Did 5 rounds so far of chemo. Would like to talk to you. E mail me at rilevy@windstream.net Would love to hear from you. Have many questions to ask.

Richard

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

Hi
I was diagnosed in Jan 2009 with Stage 3A follicular lymphoma. I had 6 CHOP treatments and was cancer free in June 2009. I had a Pet scan in Sept 2009 and all was good. I won't have another scan till Sept 2010. I taught this last year and I am feeling very good. I had heard it was a 60 year old disease but I notice there are people much younger with it on this sight. It is a scary jouney but I feel blessed as I have heard time and time again it is not a death sentence. It is like a chronic disease. I pray that your treatment goes well. Mine went very well. I did get weak after the 5th and 6th treatment. Take care of yourself.

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

At least your tx waited till the 7th round to kick your butt. Mine kicked mine on round 1. I am getting R-CVP. It was a week ago today I started my 1st round and am just now starting to feel a little more peppy.

kayebadoe's picture
kayebadoe
Posts: 81
Joined: May 2010

also kicked my butt. After the steroids stopped I just fell apart. Sores in my mouth, no taste, then metal taste. I couldn't get out of bed for about 5 days. Gradually I got better and I could taste again. I'd say almost normal just in time for next round. I had acuppunture this time and I'd say I was closer to normal the whole 3 weeks. Now this week is my 3rd round. We will just see how this one goes. I am interested to see what my CBC is. Oh and I'm gonna get acupunture again.I've had amazing amount of energy this time thru.

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Kaye,

Glad to hear the acupuncture is helping. I was amazed at the difference too. Should I ever need chemo again, I'll be waiting in line LOL.

Take Care,
Beth

Richsterr
Posts: 34
Joined: Aug 2010

I am on my sixth chemo on Monday. I have loads of questions also Dont know how to navigate around here.

Richard

cookingirl's picture
cookingirl
Posts: 183
Joined: May 2010

67 year old female - NHL, B cell, follicular, stage 4. Watchful waiting since 9/09, large abdominal tumor grew from 3cm to 12 in May, started Rituxon - CVP. Have had 4 Chemos, 2 to go. CT scan after 3 treatments showed about a 40% shrinkage but my ab is still very swollen and extended - looks even bigger to me. Some fatigue but not as much as I expected. Dr. had said I wouldn't lose my hair but not true - it's about 3/4 gone and I should stop hiding it under wigs and caps and just get rid of it. Not feeling as well as I thought I would after 4 chemos - bad back and ab pain many days. God bless us all with HNL and we'll try to keep a positive attitude as we stay more isolated than I'd like with a weakened Immune system!

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

God bless you too! So many in treatment right now that hearing what all of you are going through will certainly help me next week when I start round one. I will keep you in my daily prayers and think positive thoughts that your ab and back pain will go away soon. I just hate to hear when people are hurting...makes one feel helpless in helping them through it. Come back here and talk when you feel strong...we may get isolated from time to time..(keeping away from germs and all),BUT... we can always talk here!!! "YES" God bless you...
Love...Sue

cookingirl's picture
cookingirl
Posts: 183
Joined: May 2010

Hi Sue - thanks so much for your words of support. I have met only one NHL patient in FL so this is a great source of help for me since finding an online group. How long have you had cancer and do you know which type of Chemo you'll be starting? I hope your sleep isn't interrupted like mine - the Prednisone in CVP even two weeks after taking and before the next cycle begins lets me sleep only 3 hours a night max. That's with prescription sleeping pills from my Oncologist! Getting weary and thinking of checking out Acupuncture to see if it could help. Haven't done any alternative treatments and my hubby thinks I shouldn't until Chemo is over. Good luck with your treatment and I'll be praying for you as well -

kayebadoe's picture
kayebadoe
Posts: 81
Joined: May 2010

Has saved me. Especially with fatigue. I have energy before I get up off of the table. Please don't wait to try it.

truckingalong
Posts: 444
Joined: Aug 2010

How do you find an acupunturist? Is there a specific kind of one or use a general acupunturist? When do you go for this service - inbetween treatments or right after treatment? I had used homeopathy remedies in the past for general ailments and liked them but not recently nor this area.

Thanks,
Liz

kayebadoe's picture
kayebadoe
Posts: 81
Joined: May 2010

Go to google and search accupunture then add your city. I go to a school here in Tucson and I get my treatments for $20. each. I have them twice a week. At first I only went a couple of times a month. As I had more chemo's I went to twice a week. Its what has gotten me thru this ordeal.

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

Wow, Twenty bucks!!! Can't beat it. I live in upstate NY where a friend of mine pays $68.00 for each treatment. He claims it works well.

truckingalong
Posts: 444
Joined: Aug 2010

Great - thanks for the tips!!

Richsterr
Posts: 34
Joined: Aug 2010

Hi I am on my sixth chemo . Scan was good I am also from Florida. Tallahassee. Love to chat with you.

Richard

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

I sure would like to hear how you are doing. I haven't gotten an e-mail lately from your husband. Hope you are feeling better. You are in my prayers Joanie

cookingirl's picture
cookingirl
Posts: 183
Joined: May 2010

Hi Joanie - I thought I'd get to call you over the summer, but it's been crazy. I just found your email so I'm going to write you now on that - thanks for checking in! Fondly, Fran

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