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COMPLETE REMISSION ZERO ACTIVITY

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

NO activity at all. Don't know what else to say. TOYAL REMISSION!!!!!
(FNHL-1-4A-(5/10)

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

Way To GO!!!!!

Kellie

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

YIPPEEEEEE!!!!!!! You and Vinny just made my week! I am so very happy for you! Next Wednesday, the 20th, I go in for my midway CT scan to see if my chemo is working, and then 3 more rounds,(hopefully),and I'll be able to post the same kind of good news after my last scan. With all of the good news coming from you guys, I only expect good results for the rest of us. You have a wonderful weekend John...maybe take the Cobra out for a spin!
Happy Sue...(FNHL-2-3A-6/10)

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

SUE,
When I first went in to the clinic area the nurse came out and asked me to follow her to get my vitals. While I was sitting there she asked me if I was having any pain. I said no. She then said,You are not having any pain at all. I said no. She said Hmmmm!!! I said I am here for the results of my Pet scan. She said yes I know, I saw it. Now what would go thru your mind? I know what went thru mine. John
(FNHL-1-4A-(5/10)

vinny59's picture
vinny59
Posts: 1032
Joined: Nov 2006

Awesome news my friend!!!!!! keep the good news coming!!!!! LOL Vinny

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

Vinny,
Hows things going for you today? Are you feeling any stronger? I would normally be scheduled for round 7 this Tuesday if I was to have another round,but luckly I am not.I feel a little bit better everyday. Hopefully next week will be even better since it will be 4 weeks from my last treatment. I know its been hard for you these past few months. but now its time for some heeling to take place. Hang in there, that light at the end of the tunnel is getting brighter. John
(FNHL-1-4A-(5/10)

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

Hey John,
Who knows what makes people do such things...especially when you told her the first time that you weren't having any pain. Maybe her Friday just wasn't moving fast enough for her so she had to make your day a little rough...doesn't make any sense to me my friend. Some people are just "Butt Heads"(nice version)...ya know?...ha! Don't give her another thought!
Sue...(FNHL-2-3A-6/10)

yesyes2
Posts: 592
Joined: Jul 2009

John, Wonderful news, I couldn't be happier for you. Way to go!!!!!!! I can see why you had your scare, silly old nurse, what ever was she thinking? You and your family must be so happy right now. Go celebrate. Don't be too surprised however if there isn't a little let down as you work so hard during chemo and than wonder, and what now?

I'm so happy for everyone who has gotten good results this week, keep it up for all of us.
Leslie

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

I am so happy for you. You really earned this. I can't imagine what that Nurse was thinking. I would have been scared too. Enjoy all the relief. Mary(FNHL-1-4A-8/08)

cathyp's picture
cathyp
Posts: 373
Joined: Dec 2009

John,
So happy for you and yours,
Cathy

onlytoday's picture
onlytoday
Posts: 603
Joined: Jun 2010

John,

So so happy for you!! Great news!! Enjoy your weekend!

You and Vinny are our success stories of the week!! :)

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

I absolutely positively could not be happier for both you and Vinnie! Congratulations you two!!

Maybe the nurse thought you'd be happier hearing the good news and her warped sense of humor? Who knows. Ask her next time you see her. You are still going to be doing maintenance aren't you?

The smile just won't leave my face, and by the way my hubby said fantastic news to you both!

Beth

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

Beth,
Oh yea, I will have to do the maintenance thing every 6 months. I don't mind because it is not chemo. I have to see the Dr. every 2 months in the beginning for routine checkups. That is normal for everyone I hear. The smile won't leave my face either. I feel like a cheshire cat. John
(FNHL-1-4A-(5/10)

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Hi John,
That is such wonderful news. Congratulations. Have a wonderful wonderful weekend with your family.
Peaceful healing
Lisha

Loops55
Posts: 4
Joined: Jun 2010

I am so Happy!! I Know it has been a rough time for you and your family!! I Love you!!!! Vinny I am so happy about your results too. I am grateful to everybody on CSN that has been so encouraging, caring, understanding and helpful! Thanks to Everybody. Johnny & Vinny-may you both be able to help others fighting this bsttle. Linda(Cobra666-sster)

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

Sister... I don't have any sister. I wonder who this person could be?... No, just kidding. Believe it or not I have two sisters. They are identical twins, 5 years younger than me. They have been there for me from the beginning. Johnny (Guy)
(FNHL-1-4A-5/10)

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

Hey everybody thanks for all the kind words and support. Really appreciate it. I have to admit I had a lot of what ifs riding to the Docs this morning. Thanks for sticking with me and I will be here for you in return. I AIN'T goin' nowhere. John
(FNHL-1-4A-(5/10)

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

Hi John,
Sounds to me like you got a couple of pretty swell sisters! I sure appreciated your sister that told us about your tooth problems when we hadn't heard from you. I've got 7 that call me at all hours of the day and night. Two or three of them have the same sounding voice so we always have a good laugh when I get them mixed up and call them by the wrong name. They sure have pulled me through some scary thinking and sad nights by just being on the other end of a phone line. Hats off to family and friends who stick by us through all the hard times! You better be here John...I still have some icky "pred" weeks to share with you..hahaha! Oh joy..huh? I'll go easy on you so you can re-coop from all you've gone through...you've earned it. One last day..."yes"!!..Sue (FNHL-2-3A-6/10)

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

Sue,
I remember when my 2 boys were little I would call them for something and get their names mixed up. We had a little hot dog doggie named tippy too. I'd call one of them and say something like "come here Jon..Jarrett..Joy..Tip.. What ever your name is. I wasn't even on prednisone either. Never could get it right. They still remember that and bring it up on ocassion. Its one of those things you'd have to hear to appreciate. Now one lives in Pa. the other in Md. Now I have 4 dogs and the Joyce is still with me. I still get the names mixed up when I go to call the dogs. I still say lets go mag..ab..max..snitz..Whatever your name is. John
(FNHL-1-4A-5/10)

britta
Posts: 107
Joined: Apr 2010

John,

Wonderful news! I signed on today and found both yours and Vnny's reports. Couldn't be happier for the two of you. Had my good news in June, took the Zevalin in July and will be going back to Mayo Oct 26 for cat scan and blood counts. Hope my news is as good.

Well as I said before PTL (Praise the Lord)!

Darlene

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

Darlene,
Thank you. Make sure you keep us posted on your results. We live for that stuff you know. We thrive on good news and pray for everyone. John
(FNHL-1-4A-(5/10)

gypsy22
Posts: 17
Joined: Jun 2010

Wonderful news, I also think I see the smile on your face through the computer screen.

Elaine

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

Elaine,
Thank you and how are you doing? I now know how everyone feels now when they get the good news.
(FNHL-1-4A-5/10)

miss maggie
Posts: 929
Joined: Mar 2010

John, what a way to start my saturday morning. So, so very happy for you and your family.
Keep the good news coming. Enjoy this time and rejoice.

maggie Not sure how to shorten this. slow growing stage 1, low grade lymphoma of the small bowel DX 09/09

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

I'm dancing with you!!!

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

Congrats - so very happy for you! Wish I could have had your success - didn't happen. just 40% for me so went to Moffitt in Tampa last Friday to see what the next step is in the plan. Back this week for another biopsy - Dr. feels I've moved from Indolent to Aggressive which means a completely different treatemt than we'd talked about. When that's known, it begins - probably another stronger Chemo (CHOP). Disappointing since I hoped it would be over and I could move on with my life. But we'll do what it takes for a remission - I am thrilled for you! Fran

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

Hi Fran,
I'm so sorry you didn't get the results you were hoping for. I too will find out this month if my chemo is working or not. Wednesday I get a CT scan and then my doctor will give me the results on Nov 2nd at my next scheduled round. I suppose this is one of those things we just have to live with while battling this cancer, if the chemo is working or not. I will keep good positive thoughts for you that your doctor will get you going on the right treatment plan and all will be good. Please share with us what new treatment they come up. Try to stay positive...thinking of you...Love, Sue (FNHL-2-3A-6/10)

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

Fran,
I was really hoping for a remission for you. I know its got to be disappointing. I know it would have been for me. Hopefully you can get some answers with the biopsy(UGH). I was under the impresion that r-chop and r-cvp were designed to do the same thing, but I may be wrong. I am sure they have a plan for you and thats what we have to look forward to for a total remission. Hang in there and we will all be praying for you. It may take some time but you will beat this. John
(FNHL-1-4A-(5/10)

Chris17's picture
Chris17
Posts: 175
Joined: Oct 2010

I am new here and i am so happy for you, congratulations cobra! i will be taking my last session of maintenance chemo this Friday and i am glad i will be done with it but as the same time im afraid to cut the "apron strings". i was dx in April 2008 NHL stage 3, went thru CHOP and all the side affects. I am a bit nervous that the treatments will be over after Friday, and i just pray my remission is a long one, i spent the last hour just reading all of the posts here and im amazed at all the encouragement i have seen here, i wish you all luck in your journey to overcome and to cobra666 i wish you all the best congratulations!

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

Chris,
It would have been nice if you could have found this site in 2008. I am sure things would have been a lot smoother for you. It took me a couple of months after I was diagnosed and I was a complete mess. I guess everybody is when they hear that word. It seems years ago it was certain death, but now they have given the cancer name to every disease you can think of. I am not saying what we have is not serious,because I know it is. Its just a few years ago it was called Hodgkins Disease and there was no connection to the cancer word at all. There are different levels of this disease and some of those levels are more serious than others. They have made great strides in treating this disease which I am very grateful. It was rough at times getting to the remission stage and like you and all the others that have reached this stage I hope we all stay there. It does make a lot of changes in life with all this stuff on our minds. Like I said I am glad to be at this stage and really appreciate you taking the time to write. I hope you stay in remission forever,but if you don't then they have new things to combat this disease everyday. Stick with us we have new people all the time and you could really be an asset having been thru it. John
(FOLLICULAR NON HODGKINS LYMPHOMA-GRADE1-STAGE4 ASYMTOMATIC-DIAGNOSED MAY 2010)

Chris17's picture
Chris17
Posts: 175
Joined: Oct 2010

Hi John, thanks for the reply, you are right, i really wished i had heard of this site back in 08, im on retuxin therapy now, and i have fatigue, some pain, stomach problems, i had told my onc about it she doesnt seem to think its a problem, but it bothers me, but i guess over the last 2 and a half years i am sort of used to it, i find myself falling asleep in the afternoon something which i never did before, the insomnia was bad for a bit too, but when considering the alternative, im glad i was able to tolerate this.I will post friday after my last session, as i am glad now to have a place i can talk with others about this, again i thank you for the reply and you will be seeing more of my posts here, take care Chris

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

Hi Chris,
Thank you for sharing your success with treatment. It's always up-lifting to hear from someone finishing with a "happy" ending! I'll also be on Rituxan maint for 2 years when I'm finished with my chemo.(R-CVP). I just finished round 3, so I still have a ways to go. Please "DO" keep checking in as it is inspiring for everyone to hear when treatments are working. Good luck Friday with your last session...nice way to start the weekend knowing you will be all done! I'll keeping positive thoughts for you to have a long and happy remission!
Love...Sue (FNHL-Grade2-Stage3-Dx 6/10)

Chris17's picture
Chris17
Posts: 175
Joined: Oct 2010

Thanks Sue, i feel like a baby bird being pushed out the nest to test my wings, its a good feeling.I wish you well with all your treatments to come, as i know its not an easy journey, but i always truly believed what doesn't kill you makes you stronger, and keeping a sense of humor through everything is what kept my sanity and kept me grounded and going on.Take care Sue will keep good thoughts for you. Chris

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

Chris,
I forgot to add I too had the R-cvp instead of the R-CHOP. I was scheduled for the R-chop but since I was 60 they decided to go with the R-cvp. I am glad they did. I hear it is not as harsh as the other and less side effects. Still had the days of dragging butt and feeling weak as a kitten. I never had any side effects that I know of from the rituxin. I think it was all from the chemo. Blood counts stayed up pretty good, but did drop a little. Lost most of my hair,but no all. It was really straggly and broke off easy. Fingernails got like cardboard and broke real easy as well. I will be on the rituxin every 6 months for 2 years as well. I guess then I will see if it has any side effects or not. Its not a chemo drug, but an antibody drug.
What you are seeing at the end of the posts so far like Sue and I do,is our diagnosis,grade.stage and when we were diagnosed. It was suggeated by one of the group members to make it easier for us to remember what everyone has. Most of us have the Chemo brain and it hard to remember sometimes. It is strictly voluntary. Some participate and well,some don't, but that is okay too.
If you want to express anything here,just do it!! Its like one big happy family here. We have never met one another ,but we are still a close knit family. We are from all over the country in different states and some are from across the ocean. So please join us anytime. John
(FNHL-1-4A-5/10)

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

Great news to hear, John!! I'm sorry to be so late to hear. I've been off board for quite a while. But I've just read through these posts and I'm so excited to hear about your remission! You have been so much help to me with your posts and real understanding of some of our "old guy" issues. Man, I'm really, really pumped to hear this news.

I have not yet been able to read any other posts, but I gather there is good news about Vinny also. I hope so.

Congratulations and thanks!

Tom (I don't know how to abbreviate my dx: diffuse, large B-cell NHL, stage 4; July 2010.)

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

Tom,
Yes Vinny and I both had great news this last week. Its a scary thing going to hear the results. Sitting in the exam room for about 15 minutes waiting for the Doc. to come in. He came in and asked how I was feeling today and about appetite. He then said we are going to put you on the maintenance schedule every 6 months. No need for any more treatments. I asked what were the results? He said ZERO, there is no activity,its gone and you are in remission. I felt like I had to sort of drag it out of him. I guess its such a common thing dealing with patients everyday. Common for them, but not common for us,huh? I was wondering where you been. Thought maybe you won the lottery or something,hahahaha!!! Today would have been another round for me if I had another round to go. Felt good not having to sit there and have another infusion. The strenght is coming back a little at a time,but at least it is coming back. I don't need the nap everyday now. Seemed like I needed a nap for at least 2 weeks after each treatment. The last treatment I was napping everyday the entire 3 weeks though. The last couple of days I make it all day. Make sure you keep posting so we know what is going on. John
(FNHL-1-4A-5/10)

truckingalong
Posts: 444
Joined: Aug 2010

Congrats John!!

This brings me hope totally for me - you know we are in the older group thus having a more challenge to beat this and there you are - you did it!!! Bravo.

I am halfway there so am starting to feel like dancing on the yellow brick road towards the Wizard of OZ rather than on the lonely bumpy road!! One thing I do remember is about your bad experience with your dental problems out of town. I once had one front tooth literally moving quite a bit which freaked me out but it returned back to its place after the chemo effects slowed down. Surely makes us feeling going on a Merry Go Around!!

Thanks for your support and keep in touch then.

Liz

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

Liz,
Thank you!! I ain't going nowhere. I went back and checked and noticed a lot of people have left the site since I first started posting in June. On their last postings and they were doing fine. I will be here everyday reading and posting and watching and waiting as each and everyone beats this devil.Yea,I had some rough times, but I'm not complaining. So many others had it rougher than me. I am finally starting to feel a good bit stronger everyday. I don't need the naps like I used too. Do have times when I feel a little wore out,but that is to be expected. The prednisone put a little weight on me, but that will come off in time.You are going to have some more down days as you accumalate those treatments. When you get to the end you will probably be dragging across the finish line. I know I was as were so many on here. Your outlook and strenght will gradually return when the treatments are over. Seems like we all go thru ups and downs at different times during treatment with some having more severe downs,but I was fortunate in that mine were not as bad as some on here. I see you are having some bad times but they will get better. Hang in there and be talking to you. John
(FNHL-1-4A-5/10)

truckingalong
Posts: 444
Joined: Aug 2010

Thank you, John for the comments. I know I am running a big marathon. I am telling myself I am getting there eventually. I do feel better in a different way but more tired.
Two weeks ago, one buddy next to me at the infusion center has the same dx as me now needs bone marrow transplant (becuz he was misdiagnosed so its tx is aggressive) becuz chemo is not working well. So he found match from his brother. This really hits me becuz I am adopted and have no knowledge of my family medical history. I did searched for info 20 yrs ago with no luck. Now I have decided to open this door again for fear that I may need medical info in case... such as this! Luckily, my neighbor friend happens to be a genealogist so is helping me get started with searches. This gonna be a challenge becuz my adoption was private - not through a social service agency. I don't think I need anything but why not get this rolling while I am at home healing? Well, I am gonna take one thing at a time.

Liz
(HL-4B-8/10)

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

Liz,
I don't know how difficult it is to find a match for a BMT, but theres nothing wrong with checking out all the avenues just in case. I hope that you never need one, but there is no way of knowing till the time comes. I remember they were asking for bone marrow donors a few years ago here in NC for a young girl that they were having difficulty finding a match. My youngest son wanted to be tested for a possible match. He called the phone number in Raleigh which is about 50-60 miles from us to set up an appt. A couple of days later it was announced they finally found a matching donor.That was the last we ever heard about it. Like you said just take one thing at a time,but keep the door open in case there comes a time when a BMT is needed. John
(FNHL-1-4A-5/10)

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Hi Liz,
Your post really hit home with me. I too am adopted. Let me tell you what worked for me. I searched for many years, before there was internet etc. No luck. Then when I had my second cancer dx I asked my gyn doc to write a letter to the county records of adoption dept. Stating that I needed to know medical information. Well a few months later I received a packet in the mail with my birth name and birth parents name. The original birth certificate and adoption records. They were married at the time, but that is another story. I took that info along with what I already knew from my adopted parents, not much, but area they had lived in etc. I went to the library and started looking in phone books from southern cal. I wrote down any one with the same last name and started calling. This was before I had a computer. Third third person I called was my birth mother, she denied at first because I so shocked her, but I said please call me if you know anything and gave her my number. I didn't push, I too was shocked and not expecting to ever find them. She called back a few hours later and I talked to her and my birth father. Since then, I have met them and also two full blood sisters and their families. So, my advice is try any avenue you can. If you want to email me privately I can share more with you. The medical info really does make a big difference in my life.
Peaceful healing
Lisha

truckingalong
Posts: 444
Joined: Aug 2010

Wow! Thanks so much, Lisha for the encouragement. It was discouraging after many years of trying but I should never give up. So glad to hear that you had success in finding the info. Will keep you posted.

Best,
Liz

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