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Can't get back to 100%

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

Had last treatment on Sept.28th, but just can't get back to 100%. Its weird because I feel a little stronger everyday, but just not a 100% yet. My body doesn't really feel tired ,its that my eyes feel tired. Its kind of hard to explain. I am not expecting miracles, just wondering if this is normal. Anybody that has completed treatments maybe can relate and reply. Anybody else want to make a comment is fine too,I'm listening. John
(FNHL-1-4A-5/10) REMISSION

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

John,

It does take time, and I don't know if I can really say I am 100% back. More like I have reached at new normal.

Give yourself a break. You've been poisoned, it's going to take time my friend.

Beth

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Hey John when I went up to the Univ. Of Penn it was a real eye opener! This is the new normal, I said it before on another post, but they basically told me with all the poison they pumped into our bodies, it's going to take some time to get back to a place that even remotely feels like we did before. The good news is that it will get better!!!! Vinny

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

Vinny,
It is great to hear we have some kind of normal to look forward too. Like I was saying,my body does not really feel tired,its my eyes feel tired. It is hard to explain because you would think it would go hand in hand. I guess it could be the other way around,be wide eyed and a worn out feeling to the body. John FNHL-1-4A-5/10)

Swtkoolaid's picture
Swtkoolaid
Posts: 53
Joined: Nov 2010

Get back to normal. Everyone is right it takes a long time for that poison to leave our bodies. I think that all of us are different and will bounce back when our bodies are ready. I think it took me a good year or so before I finally felt "normal" again whatever that may be LOL....but I think that we all find that we are never the same, but have to adjust to the new us.... I felt tired and run down and needed a lot of rest for many months...just listen to your body and go with it. My thyroid went wacky at about the same time I finished up my treatments so my hypo symptoms and my after chemo symptoms were battling for first place. But it does and it will get better... keep plugging along my friend you will find your "normal" soon enough! Andrea

Porphy's picture
Porphy
Posts: 36
Joined: Jul 2010

John, I finished the end of Aug, also not back to "normal" yet. I know when I get too tired I sleep 10 hours & only wake up when my mouth & throat are so dry I can hardly breath. Evidently saliva is a very good thing. My concentration is no where back to normal, seems like breathing get my brain going in a different direction, so I get a lot of things started, just not many are finished. I was told it would take 4 months to start to feel pretty good, hope they're correct. Hopefully, things will start getting better, good luck.

Linda

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

Hi John,
After round 3 Steve's mom was here for 2 days and we did all kinds of fun active stuff. Before she left she said.."I'm so glad to see that you still look normal,and have so much energy". Now she's here again after round 4, and this morning she looked at me and said "baby cakes...you aint lookin so good"...ha! I told her I was going to be soooo happy to finish these last 2 rounds so I could get back to normal. Wise woman that she is...all she said was.."it's gonna take some time sweetie, so don't even try and rush it". Man...she hit the nail on the head. Her and my niece and sister-in-law all went out for lunch today and there was just no way I could get the energy to clean up and join them. Funny thing is...I'm tired, but for some damn reason I just can't nap. I sit and stare off and feel like I'm in la,la land. Oh well...I'm just gonna roll with it and not fight it, cuz I couldn't fight it even if I wanted to..ha! Take care John...we will figure out what our "new normal" is...one of these days! Love, Sue..(FNHL-2-3A-6/10)

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi John,
My experience is with radiation, but the recovery is similar to chemo. It took me more than a year to gain most of my energy/strength back. I never fully got back to the me before rads. But, came close. I had lots of back and forth. Felt good and on track and then back to not so great.
You are so newly done with the chemo and all the stress and fears. Give yourself plenty of time, lots of rest and know that you are a true survivor of the biggest battle. It just takes time...
peaceful healing
Lisha

tcvine's picture
tcvine
Posts: 174
Joined: Aug 2010

Hey John,

I have no idea about the new normal that we will all eventually get to. But I do appreciate your posts, and since you are ahead of me, please keep coming back to let us know how it is going.

I have only one more infusion left (the day before Thanksgiving), and then I have to wait until Dec. 21 to have the tests completed and the final consultation in Houston. So I am very interested in your progress as it leads me by a few months.

Thanks for all your help.

Speedy recovery to you!

Tom (DLBCL-4-7/10)

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

Tom,
Thanks for repling. I guess what I am doing is trying to find out what and when to expect the return to normal will be and what to expect when it does. At the same time I am letting everyone know and what they can expect after treatments are over. I know we are all different in our reaction to treatments and what effects they have on us. There are a couple of people on here that seem to be following the same effects I had. Just trying to keep them up to what they might encounter with each treatment building up in our bodies. I know they appreciate it. I know I would because it can be a very scary experience if something doesn't seem right after each treatment. I try to answer whatever I can thru my own experiences. There was a few people on here when I first found this site that helped me more than they will ever know. I know they are still out there and probably reading whenever they can. They have gone back to the everyday hustle and bustle of life and probably do not have the time they used to have. I know how that can be. I am retired and have more time on my hands. Nobody should have to go thru this thing by themselves. It is that I believe people with lymphoma should be talking with other people that are going thru the same things. I see a lot of post on here that I just don't know how to respond too. Just like everyone else on here we will beat this thing. Just have to keep that positive attitude. (FNHL-1-4A-5/10)

ocbeach56
Posts: 7
Joined: Apr 2010

John,

I had a SCT in 2004 after months of chemo. It took sometime to feel "back to normal" but it is not about feeling normal, remember it is about feeling stronger and healthier either day. Normal will come but just try to get plenty of exercise and do "normal" things. If you are performing the regular activities that you enjoyed before the illness you will find that you will be feeling normal. And it's no biggie that you get a little worn out after awhile. You're healthy and your body is recovering from kicking cancer's butt! Take a small break if needed but don't get discourage. Be sure to be patient,keep doing the fun stuff and you will feel back to normal.

DAN

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

Hi JOhn - I can relate to what you're saying about your eyes - mine became so dry Im using Restatis (prescription for dry eyes) twice a day and over the counter single dose drops 3 or 4 other times a day - they're driving me crazy! All my skin got dry from chemo drugs, but eyes the worst. It won't go away for me anytime soon - I finished my CVP-R chemo Sept. 12 with little Remission, and starting another one next week that's two consecutive days each of the 6 treatments, 5 hours each day. Bendamustine/Rituxan was just approved 2 years ago for Refractory Indolent, B cell, Follicular NHL and the success rate is higher than CHOP and it's not as toxic to your heart and liver. So - another round until about March and hope this big abdominal tumor is shrunk in this process! Hope your eyes are better real soon - Fran

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

Fran,
I finished my last treatment Sept.28 and then a week later got my pet scan. A week later got the results and they said complete remission. I started out with 2 tumors that were 5 and 6 cms. I assumed they shrunk with them saying complete remission. I really feel bad that you have to go back for more treatments. It seems they are trying to get away from the r-chop from what I have been reading about different treatments people are getting on here. I was originally scheduled for it, but they changed it at the end and decided r-cvp would be the best. Probably because the muga scan was low normal. R-chop will cause some heart problems later from what I hear. I am not sure what refractory indolent is though. Maybe you can explain it to me. As far as the eyes go I am sure it is dry eyes and I use over the counter drops that help a little,but not enough. Next time I go for my eye exam I will ask about the restasis. I see commercials on tv all the time about it. Just wish it would clear itself up after a while. Thinking of you and everyone else and hoping for the best. Keep us updated, John (FNHL-1-4A-5/10)

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

Hi John,
Even before I was diagnosed with cancer or started chemo treatments I had a problem with dry red/tired eyes. Last spring when I got my new glasses my eye doctor told me to quit using eye drops that weren't all natural...(Visine, clear eyes, Murine etc). He had me use a preservative free eye drop called Soothe. Bausch & Lomb makes them and you can get them without a precription. They come in little individual sterile dispensers...one dispenser lasts me for 3 days when using just one drop in each eye twice a day..(morning and evening). Make sure you get the box that says "preservative free" right on the front of the box. They come 28 dispensers per box and I think they cost $11.00 (+ tax). I really like them ...gets the red out and restores your eyes natural moisture balance without the use of chemicals that restrict the blood vessels in the eyes. Just a suggestion...they sure work for me. Sue..(FNHL-2-3A-6/10)

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

Sue,
Its a real pain with the dry eyes. They feel tired and burn,especially if I go out in the sun. Guess that really dries them out. They do get red too. Sometimes it even feels like I have sand in them. I am going to ride up to the drug store today and see if I can find the Soothe. Thanks,John(FNHL-1-4A-5/10)

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

Hi John,
Do you have a Walmart close by? Thats where I get mine in the eye care section.Blue box. If you are one of those people that just hates Walmart and refuse to shop there, then you can order them on-line at drugstore.com, but you will have to pay shipping which costs about half again as much as the eye drops.
Sue..(FNHL-2-3A-6/10)

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

Sue,
I love Walmart!!! I have one about 18 miles away, but when you live in the country(no stop lights or stop signs and a 55mph speed limit) that is just down the road. hahaha. John (FNHL-1-4A-5/10)

truckingalong
Posts: 444
Joined: Aug 2010

Hi, John,

I use eye drops from Costco's to lubricate my eyes when they get dry. That did the job!! Drive at speed, grins.

Liz

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

Liz,
I really appreciate all the advice I can get!!! But when I say dry eyes,I mean really dry. They are dry all the time. I don't know if it is from the chemo or just getting old. The eye dr. said I had dry eyes a few years ago. I don't remember feeling like my eyes were dry at the time. I did notice he had dry eye advertisements all over the office and his prescription pad had the same drug name on it too.HMMMM!!! The last time I was there he had some sort of vitamin supplement for the eyes advertisements all over the office and his prescription pad had the same name on it. Guess what? I needed eye vitamins. I think when a person has dry eyes they are the first to know it. Well now I know I have dry eyes. Thanks for the info. John (FNHL-1-4A-5/10)

WonderWoman88's picture
WonderWoman88
Posts: 19
Joined: Nov 2010

I just finished my treatment a month ago and I get dry eyes alllll the time. It sucks and im not really sure why I do. I just keep visine with me and make sure to keep them moisturized.

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

Visine..Clear eyes...Murine, etc use a chemical that constricts the blood vessels in the eyes. Thats why the red disappears so quickly after using them, but it's not good for your eyes. My eye doctor is also a surgeon and says "all natural" preservative free eye drops are the only kind to use on a daily basis... unless of course your eye doctor has prescribed something stronger for you. Just sharing what was told to me.
Love...Sue (FNHL-2-3A-6/10)

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

Hi Sue - you're so right! My ophtomologist told me several years ago never to use Visine or any of the names you've heard of for the same reason you said - quickly takes the red away, but very bad for your eyes. I buy the same single vial preservative free drops as you, and wouldn't think of using the other kind ever again. I do use them along with Restatis (prescription). They also last me 3 days - we'll keep telling everyone to stay away from Visine! LOVE those salmon - how lucky you are to live in WA state! Though maybe for the next 4 months I'll take my Florida weather instead and then switch with you! Fran

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

Hi Fran,
I agree with you...the next 4 months in Florida will be much nicer than here. Hubby called a few minutes ago and said him and Josh got snowed on while fishing today. It's not the first time they fished in the snow and won't be the last! Not me...those days are long gone..had my fill of cold weather fishing back in the day when our boys were young.ha! Be sure to let us know how your new treatment goes for you. Maybe this time you will make it to full remission. Keeping good thoughts and prayers for you.
Love...Sue..(FNHL-2-3A-6/10)

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

Sue,
Got the Soothe today. It made a quick difference. It took the sandpaper feeling away right away. John(FNHL-1-4A-5/10)

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

Hi John,
Thats great! You will knowtice the longer you use them and as you replenish moisture to the eyes, many eye problems seem to go away...redness, itchy, scratchy etc. Natural perservative free eye drops don't make the red disappear as fast as the chemical eye drops, but over time the drops keep your eyes well lubricated, which in turn cuts down the redness from even happening. All too often in our society today we look for the "quick" fix which 9 times out 10 is "NOT" whats in our best interest. So glad I was able to help.
Love...Sue (FNHL-2-3A-6/10)

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