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Clean CT Scan

yesyes2
Posts: 592
Joined: Jul 2009

Hi,
I just returned from my Onc's office to get the results of my 4 weeks after completing RCHOP CT scan. Yipee.........! Appears to be all clear, at least for lymphoma. Lots of incidental findings but looks good. So why am I not thrilled. Don't get me wrong, I'm very happy the lymphoma is in remission. I just feel like I'm waiting for the other shoe to drop. Especially when the doctor's don't know if it will stay away.

Has anyone else felt like this after getting good news. At least when your doing chemo your actively doing something. When my onc said I didn't need to see him for 2 months I said that's way too long. But he thinks 2 months is just great! How often did you all see your onc after finishing RCHOP?

I guess I've just been fighting this disease for so long that I don't know how to now get on with life after Cancer. I was originally diagnosed in Jan. 2008 and treated with Rituxan for 4 wks and than once every 8 wks until Aug 2009. My lymphoma recurred in June 2009 and treatment didn't begin until Nov 2009 because the doctors couldn't figure out how to treat it. Now they have no ideas about further treatments because I don't fall into any other NHL category. Sorry for gripping, as I really don't usually feel sorry for myself.

Any words of wisdom will be greatly appreciated. There is so much valuable information on this board and so many wonderful people.

Blessings to you,
Leslie

winthefight's picture
winthefight
Posts: 163
Joined: Dec 2007

Congrats on getting clear scans and entering into the wonderful world of remission!

Finishing chemo treatment is a very scary place to be because you are use to being seen by your onco on a regular basis. So, that comfort zone of have a check up every 1,2,3,4 weeks was very comforting. Now that you are in remission, you are probably thinking, now what do I do?? I have been there. It will get better in time. It's a process that will take as long as it will take. I've been in your shoes. I had both RCHOP and when it recurred, I had RICE. I too was worried and wanted to know what other options were available....my oncol stated there were a couple IF it were necessary.

So, be encouraged. What you are feeling is completely normal. It is a process. It may be something you may want to talk to a therapist about. But I am celebrating your victory with you!.

So continue to be blessed and enjoy your new freedom!

yesyes2
Posts: 592
Joined: Jul 2009

Thank you Win for your reminding me that what I am feeling is normal. And that I'll get there in time. And that it is a process and we all travel through it when we finish treatments.

You have had a long hard fight with you disease and I am so very happy that you are also in remission.

We all will continue the fight.
Leslie

Tracie1981's picture
Tracie1981
Posts: 125
Joined: Mar 2010

Its always so wonderful to hear about good things!! Congratulations on remission and Thank God for miracles and healing, its so great that your scan came back clear! God Bless you and dont worry sounds like everything is going to go wonderfully!

yesyes2
Posts: 592
Joined: Jul 2009

Hi Tracie,
Thank you for your kind words and thoughts. I know you are dealing with your own chemo issues and I wish you the very best of outcomes. Let us know how you are progressing.

God bless,
Leslie

Tracie1981's picture
Tracie1981
Posts: 125
Joined: Mar 2010

Its always so wonderful to hear about good things!! Congratulations on remission and Thank God for miracles and healing, its so great that your scan came back clear! God Bless you and dont worry sounds like everything is going to go wonderfully!

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

Leslie you are absolutely normal. This will be your new normal. I was cancer free in June 2009 and then again in Sept 2009 from a PET scan. Everytime I have anything I think of lymphoma. I have been told that time helps a little. They say it comes back but I try not to dwell on it. I try to get up every morning and thank God that I can go to work(unbelievable) be around people , be able to drive myself to the grocery store etc. I started a Cancer support group in my church and when I leave there I am usually grateful I had Follicular Lymphoma and I am 62. I hear of so many stories that I wouldn't trade places with. It is so hard not to be scared and paranoid. I see so many people who have Stage 4 (I had 3) that are 10 years out and still thriving. God bless you and if you want my phone number we can talk in person and help each other anytime you need it Joanie

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

I forgot to tell you Leslie, I told my oncologist I did not want to wait to see him . I see him every month for at least a blood test. I have Rituxin every 12 weeks and had my port out Tuesday. Hey if it makes you more comfortable to see him, ask. I had a Dr. from Moffet Cancer Center in Tampa tell me that the blood test and the physical were good signs of a recurrance. He is a research Dr. for follicular lymphoma. I will not get another PET scan till May which is a 8 month span. Take care of you.

yesyes2
Posts: 592
Joined: Jul 2009

Hi Again,
I told my onc I need to see him more often than every 2 months and he said going 2 months is a good thing and would be good for me. He is nearing retirement, pretty much working just part time, has been my onc for 17 years, through 2 breast cancers and lymphoma twice so I'm very attached. And very concerned about when he retires as I will really miss him. But I'm sure I'll be fine, and if not I will get myself in earlier. He doesn't even want blood work done monthly, wants every 2 months. Just need to be sure to get my port flushed every 4 weeks. By the way my tumors, lymphnodes were all deep in my upper and lower abdomen so could not be felt. Blood work other than LDH was always normal. With out the PET/CT and CT scans I wouldn't have been diagnosed.
Take care of yourself,
Leslie

yesyes2
Posts: 592
Joined: Jul 2009

Hi Joanie,

Thank you so much for pointing out these feelings I have are perfectly normal. I know that in my brain when applying to others but seem to fall short when I'm dealing with my own emotions. God bless you for starting a cancer support group. It takes a very special person to take on a support group. I used to facilitate a cancer support group many years ago,(17 yr survivor of stage 2 breast cancer) and know the wonderful rewards gained in helping others. Hearing other Cancer patients stories certainly makes me grateful for my time on earth and I'am thankful that my NHL is no worse than it is.
Joanie, what state do you live in?
The best to you,
Leslie

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

Hi Leslie, I live in Florida in the Tampa bay area . I live in a small city called Indian Rocks Beach. I love this site as it helps me stay somewhat sane. I hate to be a worry wart. I have lot's of faith and it really helped me through my chemo. I hate to be paranoid and let it take any of my joy.

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

So glad to hear about your results and can also appreciate your mixed feelings as I recently had the same experience. I felt badly for the way I felt. It was very confusing. I guess part of it was not really being able to feel free to celebrate but instead needing to immediately focus on where to from here. I will do the Zevalin soon. Good luck to you and God bless.
Mary

lillyfield
Posts: 8
Joined: Feb 2010

Hi Leslie, So happy to hear your test came out favorably! Wonderful!!!!!!

In a previous message to me, you asked how my husband Gus was doing with his F.lymphoma treatment. The oncologist put him on Treanda because there was still a small swelling in his groin area. He had one treatment with Treanda and goes for a second one this coming Tuesday. He tolerated Rituxin very well, BUT Treanda is awful for him. He can just about walk to the bathroom, appetite way off, not sleeping well, and the pain in his back area is knocking him out. Hope he is able to make it to Tuesday appointment to find out if Treanda might need to be given in different strength. Tylenol extra strength does not give him relief either.

Again, So happy to read your positive outcome. Go girl!

Lynn

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