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Just back from Mayo

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

After an extremely long day I am happy to report that the CT scan was clear. Whew!!!! I feel like 1000lbs has been lifted from my shoulders. Thank you Sue and Lisha for asking, made me a little teary. I don't have to go back for 6 months unless something comes up. My doctor discussed with me at length the great amount of anxiety all of his patients feel about upcoming exams and follow ups. He said it's a huge problem for all of us and asked if I knew of any ways in which this could be made easier. I told him about all of you and he said to ask everyone. I know for many of you it will be the speed with which you get your results but aside from that can anyone think of anything that may help. He was very sincere about this and I liked it. Now I am sorry about the rambling!!!!! Adrenaline crash. Thank you all so much. Mary

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

Hi Mary,
That is wonderful news. I am sure that you must be feeling such relief. I am so happy to hear that all is clear.
All the best to you, always,
Lisha

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

Thank you so much Lisha and I sincerely hope and pray you do well also. We ALL deserve a good healthy break. Mary

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

Mary,
I was thinking about you all day. Great news. The only thing I can think of as far as relieving some of the stress is to tell the Dr. to pull the cure out of his hat(COME TO THINK OF IT I WOULDN'T CARE WHERE HE PULLED IT OUT FROM). Now that would be the mother of all stress relievers wouldn't it? So glad to hear the great news. John(FNHL-1-4A-5/10)

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

I guess I'm not too tired to laugh. You are too funny. Thanks so much John. I think I'll pull myself back through the knothole and get some sleep. Mary

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

Hi Mary,
Thats wonderful news and I'm soooo happy for you. It's nice to get that weight off of your shoulders...indeed! You can tell your doctor for me that "speed of getting scan results" really needs some serious improvement. Thats the only complaint I can come up with right now...if I think of something else I'll get back to you. Have a great weekend Mary. Much love...Sue (FNHL-2-3A-6/10)

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

Your posts are always appreciated. I hear you about the waiting that is so hard. I am lucky to not have to do that but please don't think that I feel that Mayo is the only place to go to receive care. I can go there because I live in Minnesota. If I didn't live here I for sure wouldn't be able to. It's sounds like you have developed a good relationship with your MD and that he is taking very good care of you and you trust him. That's the important thing. You have a great weekend too. love, Mary

Deb S
Posts: 11
Joined: Jan 2011

Clear is the results we all aspire to! Congratulations and wishes for continued success!

Deb

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

Thank you so much and yes it is an aspiration and a blessing. It doses come with it's own set of issues but I will take it with much humbleness. Mary

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

Congratulations on your clear scan. As you say, a very big load off. Really happy to hear about it.
Now, relax and enjoy it!
Tom (DLBCL-Stage 4-7/10-Remission)

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

And that,as you know, is the key. Take care. Mary(FNHL-1-2-4A-7/08-Remission) Thankful to be able to type that last part with certainty again!!

miss maggie
Posts: 929
Joined: Mar 2010

Hi Mary,

Nothing to be sorry about. You certainly have the right to ramble on. Again I have to repeat, it seems the New Year 2011 is starting on the right foot. Hopefully, the good news will continue for everyone.

Love Maggie DX 09/09 ectranodal marginal zone b cell NHL remission Jan 2011

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

Congratulations Honey! Wonderful news, and yes anxiety is a part of my life too. But it does get better with time.

Enjoy your weekend!
Take care,
Beth

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

Thank you. I will look forward to it getting easier with time. I think this time was the hardest because it was the longest period I have gone without being seen or being treated etc. At least now I know I can maintain,at least for 5 months,on my own. How are you doing? Mary

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

I am happy but also want good results for all. Sometimes I feel awkward posting positive results while others are struggling so much. But I try to tell myself that it gives hope. Mary

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

Mary - just want to add my congrats and very best wishes on your Remission - can't get better than that! So very happy the anxiety is gone and you can relax a bit. What a considerate Oncologist to ask your input - he sounds caring and wonderful. I can't add a thing other than echo sooner test results from the Dr. I go Monday for my first CT after 3 months of Treanda/Bendamustine chemo and we're anxious since it's my second line chemo. I love my Dr. but don't have an appt. to see him until Friday, thus 4 more days to worry. I noticed Sue received her results in the mail - hubby looked that up and found there are 15 states that's not allowed in, and Florida, where we live, of course is one! For my ending scan, I will be sure to make the follow-up appt. the very next day since they know by late afternoon on the day of the test.

Do you have any follow-up treatment such as Rituxan for 2 years to do? NEVER feel bad reporting great results - it does give us hope that one day we'll ALL be able to post such good news - Fran

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

Thank you so much. Yes my MD is really a sweetie and very genuine. I posted a note to you on your Bendamustine thread also. I had the R CHOP ending last January(2010) followed by Zevalin in April. So,for me, no more treatment going forward just the followups. Oh and by the way I did not have a complete remission from my first round of treatment either. That was Rituxan and a drug called Ontak as part of a clinical trial. I then had the R CHOP and achieved CR then the Zevalin to increase that remissions duration. So far so good, but hard won. So hang in there and I know you will be posting your own good news soon. Prayers,finger crossings and all of that to you. Mary

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

Hi Mary - will check the Bendamustine site next - good to know RCHOP brought CR - super! I know that will be my next one down the road and I'm so nervous about it! My hair is just now growing in and it's not supposed to fall out with Treanda, but completely with CHOP. Not the worst side effect, but had to go to wigs and scarfs after 90% thinning with CVP-R and getting so tired of those thingsw - will be a year in June. Wish I had the nerve to go "as is" but after having shoulder length hair before, it's hard! I hope the Zevalin brings a LONG remission for you! Fran

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

I am so glad to hear about your great news Mary. When you hear the REMISSION word it just makes your spirits soar. Thank you for sharing your awesome news!!

yesyes2
Posts: 592
Joined: Jul 2009

Wonderful news Mary, I am so glad you can now relax and feel more confident about your staying in remission. I guess we are pretty much on the same time schedule, your ahead of me by a few weeks. I know getting to that one year mark for remission and not having a recurrance was really a biggie for me. My one year anniv. will be Feb 15th. And your doctor sounds wonderful, can he be cloned? I love my Oncs but neither has ever asked for feedback on how to lower our stress levels over getting scans. Actually I just wish they would just mail me my scan report, the hospital says they are not allowed to before we speak with the doctor, strange, as I leave with a CD of the scan which I can look at on my PC. If it's a PET it gives the SUV on the CD. Anyway, the most stressful time for me when awaiting test results is seating in the doctor's office waiting for him to come in, my heart pounding in my ears, I have very dry mouth and find it difficult to speak or think clearly. I think just thinking about it has my BP up, LOL. My Onc also only works 3 days a week so getting results in a timely manner has to be planned around his schedule.

Also congrats on graduating to every 6 months, I'm still at every 3, which is great for me. Have a wonderful weekend Mary. You certainly have earned it.

With blessings,
Leslie

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

Boy you really described the feelings well. I find that scene really scary too, the waiting for the footsteps in the hall, the shuffling of papers and then the doorknob turning. Ooooeeee! LOL He did tell me he tries to come in and say something right away before any chit chat. And he does do that..he opened the door and said "all is good" and then we said hello. I did kind of tell him when he asked for feedback that he was doing his job and the stress part is pretty much my job to cope with. His big concern is that he has so many people who walk out of his office door already worrying about the next scan. I guess I don't fall into that group, I can pretty successfully back burner it until it gets close. Oh well, something to think about and help each other with. Again thanks and good luck to you. We are really close in our journeys. Mary

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

I really appreciate it and yes I do feel my spirits soaring. How are you doing? Hope all is well. Mary

onlytoday's picture
onlytoday
Posts: 608
Joined: Jun 2010

Mary,

Great news about your clear scan!! So very happy for you! I'll keep praying for you !

Sounds like you have a great doctor at Mayo. That is so important to have someone who hears you. Enjoy your weekend :)

Love,
Donna

NMZ NHL stage IV 05/10 REMISSION 01/11/11

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

Posted a thank you to you also but got bumped off when I hit submit last night. Then couldn't get back on. That's never happened to me before. So thank you and I hope all is going well for you. Mary

britta
Posts: 107
Joined: Apr 2010

Mary, so happy for you, that is just wonderful news. Again your doctor sounds like a dear, but then you too are, so how can he help but respond to that. Thank you for all you have done to help me through this journey. Even though I don't come on this board very often, I think and pray for all of you often.

Blessings,

Darlene

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

And thank you. It's so good to hear from you. I think of you often and would love to know how you are doing. Please let me know and God bless. Mary

britta
Posts: 107
Joined: Apr 2010

Hi Mary,

I'm doing well, my wbc finally came up to normal range on January 6, so that was good news. I still ache some but I take a small dose of prednisone daily - and then there's the fatigue, but I guess everyone goes through that. Supposed to go to Mayo tomorrow for blood work and check up, but after watching the news tonight and seeing there's a winter storm warning for the next 24-36 hours, we decided to stay home.

How are those beautiful babies? They must be about 7-8 months, are they mobile yet? I saw their picture on your page a while back, they are sure cuties. Must bring you much joy.

Darlene

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

Glad to hear you are doing well. I don't blame you for not going to Mayo today. It doesn't look too good out there and is supposed to snow all day. I have to work this afternoon and am just dreading the slippery struggle for 35 miles. I have to get from Stacy to Maplewood AND home again at 11PM. ICK! Oh well....I know what you mean about the fatigue. It is better for me over the last month or so but I still tire faster if I try to overdo. But do hang in there as it improves very gradually. Thanks for asking about the babies. They are 8 months now and very busy. Neither one is "officially" crawling but oh so close. They do however manage to get where they want to be one way or another. It is so fun and has been a great motivator for me also. I try to help my Daughter out as much as I can and somehow I think that has helped get some of my energy back if that makes any sense.
Hope your check up goes well when you do get in,please let me know. Take care, Mary

711tom
Posts: 44
Joined: Mar 2010

I love hearing good news on this board!!

George

truckingalong
Posts: 444
Joined: Aug 2010

Congrats, Mary for the great news!

I don't recall about you reporting remission until now so it is a thrill to hear that. Although I am in remission from my last scan of first week of Dec. I will have another one on Feb 15th, huh! I had my last chemo last week so I guess they want the final report after my treatments are done.

Take care,
Liz

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