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Dr. Appt.....

allmost60's picture
allmost60
Posts: 3179
Joined: Jul 2010

Hi guys,
Well...First off I want to wish John a big Happy Birthday wish..I hope you are having a perfectly wonderful day. The best I can give you from my doctors appt is...I'm stable. I got the S word instead of the R word..ha! My blood work was ok, a little low in some areas, but nothing to worry about at this time. I was informed that I'll be starting my Rituxan maint on Feb.14th..once a month to be repeated every 2 months for the next two years. It appears the tumor in the Axillary & Supraclavicular Anatomy tested positive for existing disease, and is borderline in shrinkage...he said it's right at normal but with active cancer still present.He said we will keep a close eye on it..(wait and watch) Anyways..thats why he is starting right away with the Rituxan. He doesn't want me going for extended periods of time without the rituxan in me. By doing it this way he hopes the rituxan will stop any further disease progression in this one tumor, and also keep all of the other smal mm tumors from growing. My heart rate was a bit high in his opinion, so he wants to keep a close eye on it. I'll get blood work done every two months when I get my R-infusion and he will monitor my heart closely, since apparantly Rituxan can damage the heart and cause other heart related problems. Anyways...not bad news by far, and I'm perfectly fine with being "stable" as to "in remission". I kind of hoped to have a bit more time before starting the Rituxan maint, and of course would rather go every 6 months instead of every 2 months, but hey...we don't always get what we want...right? Right. Anyways...I think the overall picture looks ok and I'm fine with everything we talked about. He answered all of my questions and did a pretty good exam of my body..(didn't have to strip)whew, and just sat on the edge of the table..ha! Only had 3 hot flashes during the visit, so that was good! Well..we are heading out to get some diner, so if you have any questions..I'll check back in when we get home.
Love ya all...Sue (FNHL-2-3A-6/10)Stable (O:

miss maggie
Posts: 929
Joined: Mar 2010

Good evening Sue,

What a great sense of humor. Good for you. Actually in my opinion, I thought your news was very encouraging. I thought it kind of funny, starting Rituxan treatment on Valentine's Day.

I think because I had no side effects from the Rituxan treatment I had in Dec 2009, I really never did research on the side effects. Another Thing I learned on this site, possible heart problems from Rituxan.

Your doctor sounds very thorough. I am no doctor, but. Somehow in my opinion he is doing everything right. You are in good hands.

I hope you enjoyed your dinner with hubby. I am thrilled to hear your good news on being stable.

Yes, we all love you too. Maggie

DX9/09 Extranodal marginal zone C cell lymphoma - remission
gone, no maintance with this sub type

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

Hi Sue,

To be very honest, I was wishing for remission, which we would all like better than stable. But stable is better than progressing. You and I don't have the same kind of lymphoma, but from what I have read, it is actually more difficult to kill the slower progressing disease. Actually, I was pretty surprised when they told me that there would be no maintenance treatment like you will be getting. I guess it could be the difference in the type of disease (or any of hundreds of things).

But, I'm still thankful to hear that you will not have to undergo another full course of the same or stronger treatment. Even with the Rituxan, you should be able to begin to recuperate from the worst of the chemo. It may take a while, but I will be looking forward to hearing about your fishing trips (with pics).

And John - a BIG shout out for your birthday also! This is a great one, no matter what age!

My best to All,
Tom (DLBCL-Stage 4-7/10-Remission)

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

Hi Sue,
That is wonderful news. Enjoy it. Stable is a super place to be. many folks have the Rituxan for years after chemo. It should keep you in a great place as far as tumors go. I'm sure you will get lots of replys from others who are on the Rituxan plan. You must be so relieved. Hooray for you..
Lisha

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

I'm doing the every other month and from the one time I did the every week for 4 weeks exhausted me and I admit, it's much easier on me. Also, I feel better with the more frequent check ups. I did do the 6 month checkups, but relapsed before I made it for a full year. Plus, my doc's a cutie, makes it much easier to go to haha.

Stable is awesome Sue. So much better than unstable LOL.

Tom, If you have DLBC, my friend also did not have to do the maintenance rituxan lucky girl. I guess it's something to do with the different type of nhl.

Stay on top of it but sounds like your onc is. So much better than your first doc.

Take care and enjoy dinner!
Beth

truckingalong
Posts: 444
Joined: Aug 2010

Hi, Sue,

Glad to hear there is really no bad news. It is good to know that your onc is keeping an eye on what s happening in your body and so you will be fine.

My chemo went fine too. Right now, I m surprised there is not as much pain in my tummy and elsewhere - but maybe it will hit me soon. So I am eating with satisfaction.

Blessings to you and everyone.

Love,
Liz

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

Hi Sue - great news! NO more chemo - yeh! Know you'll do just fine with the Rituxon - your two year plan every 2 months is what I'm to do this summer when I'm finished with chemo. Hope you have no reactions at all and can resume your life ASAP - so happy for you!

Just don't forget about us on this site and keep checking in - everyone would miss you if you leave us! Fran

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

Sue,
Its better to hear stable than progression thats for sure. I was so sure it would be remission. Still wondering about that pet scan though. The retuxin still acts as a cell killer so having it every 2 months may just be the way to go right now. Didn't know about the heart thing though. It is weird it worked on some of the tumors and not the others. Maybe the grade 2 had something to do with it,ya think? John(FNHL-1-4A-5/10)

allmost60's picture
allmost60
Posts: 3179
Joined: Jul 2010

Hi John,
Grade doesn't appear to be a factor from what I've been reading. I can't explain it the way he did, but basically this one tumor(clavical) must have had a bulkier molecular structure which made it harder for the chemo to destroy/shrink. He said the rituxan will continue to kill the cancer cells so thats why he wants to get it started earlier and more often. Mind you, this is my shortened "non-doctor" way of explaining what he told me. He went on to say I won't need another scan for a year, unless tumors appear again that we can see and feel, or if I start having weird symptoms. I asked why he didn't do a PET scan and he said the CT with contrast serves the same purpose..(in my case).I asked if my clinic does the Molecular level blood test and he said yes they do. I think he said it is done after a period of time being in full remission. Anyways... what I took away from todays visit is this coming year (for me) will be "watch and wait" along with R-maint as a kicker.I'm good with this plan...especially the part of not having to take the nasty pred!!! Having my R-fusion on Valentines day means I should get xtra candy and xtra love...don't ya think? Well...I'm sure gonna milk that one for all it's worth come the 14th..hahaha! Hope you had a good diner at the buffet. We went to our favorite neighborhood mom and pop Mexican joint.The food was yummy! Felt good to just get out of the house, relax, and have a peaceful quiet diner together.Take care..
Sue..(FNHL-2-3A-6/10)stable

P.S..Fran..I don't plan on going anywhere..I love this group and will be logging in EVERY day...you and everyone else better too!!!
Liz..Glad this round is done...I'll be praying for a peaceful painless week for you!
Mary...Just 2 more days now...I'll be sending positive thoughts your way for Friday!
Vinny...hope your scan is great..let us know!
Hi Tom...glad you dropped in..missed you!
Good night peeps...love ya.

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

I wish for you too, the R word!!!!! but with this disease we will take stable!!!! Stay as strong as you are Sue!!!!! Wishing you well Vinny

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

I'm glad your appointment went well. Stable is where you are and stable is just fine. It means that you are in no danger and can be managed effectively from right where you're at. Yes remission is an ultimate goal but can sometimes be illusive and can take a long time. I believe the every 2 months of Rituxan can help with that though. At the very least it will keep things at bay and let you remain stable. I had a stubborn area above my collar bone that caused me to have a partial remission and I think if it would have been stable I probably would have gone the same course as you but because it was pushing my windpipe out of place and sitting on top of my carotid artery they were forced to treat further. Sometimes it's location,location,location! I am happy that you didn't get the other "R" word which is refractory meaning no response at all. Lucky for the stable. I would take it in a heartbeat(pun intended here) with the fast rate and Valentines Day and all. Did they take into consideration the stress factor? Carry on honey and know that you are being taken care of just exactly as YOU should be. Thanks for the well wishes for Friday. I'll let you know. Mary(FNHL-1-2,4A(7/08) Remission?? 1/28 will tell the tale!

allmost60's picture
allmost60
Posts: 3179
Joined: Jul 2010

Hi Mary,
Yes..my doctor did tell me that after we finish our chemo rounds and continue through recovery,maint,etc, that we should also work hard at keeping stress levels down. He said "everyone" with or without disease, would have better health if we would cut out the majority of stress in our lives. I secretly wanted to blurt out..."Well..you doctors need to do your part too by getting our test results to us faster and spending more quality time with us during our appointments"....but...of course I didn't..ha! I'm good with this guy...he's getting better...yesterday he spent a good amount of time with me and finally earned those "big bucks" he gets from my insurance co. You take care Mary...and try to stay as "stress free" as possible until Friday. I've got you in my prayers friend!..Love...Sue (FNHL-2-3A-6/10) Stable

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

And your sense of humor remains intact. I only mentioned the stress thing because I was wondering if the stress of the moment might have caused the fast heart rate. I ask because that happened to me at one appointment with both my heart rate and blood pressure. But by the end of the appointment it was back to normal. Me...stress free?? I'll try. lol Mary

britta
Posts: 107
Joined: Apr 2010

Sue,

My second laugh of the day. Too bad I have to go to CSN to get some humor in my life. Was laughing at you're "milking" the Valentines thing. Seriously though, I hope the Rituxin maintenance will bring you into complete remission. Meanwhile the stable is good, I didn't know what you meant when you said the "S" word, knowing you, I thought it might mean something else. You are not to shy about expressing yourself. That good sense of humor should help keeping you stress free. I'm glad you like and trust your new doctor, that sure helps, doesn't it.

Darlene

winthefight's picture
winthefight
Posts: 162
Joined: Dec 2007

Hi Sue,

congrats on the great news. Stable is such a great thing. It is wonderful to see that your oncologist is monitoring you closely. Believe me you will appreciate it. It will give you comfort. I have been on a Rituxin maintenance plan since 2008. I am doing extremely well. I have no heart problems....even though both parents have a history of heart problems. My maintenance plan is: one trmt a week for four weeks. I repeat this cycle every six months.

Rituxin is such a great targeted drug. It has been wonderful for me. In the beginning I was fatigued. My last treatments (this month) went very well. I was never fatigued as I normally am.

So, as a survivor who has been using it for over two years, Rituxin rocks! I am happy to see you are beginning your treatments soon. Rituxin, in my opinion, is like the old milk commercials......it does a body (lymphoma survivor) good!

Good luck.

allmost60's picture
allmost60
Posts: 3179
Joined: Jul 2010

Hi,
Thank you for telling me your experience with the rituxan...it's always comforting to get feedback when starting out on a new plan. I "personally" think the prednisone is the culprit for my elevated heart rate, but my doctor says there is no way to know for sure at this time because the chemo from my last round on Dec 14th is still working. In the next few months he's hoping to see a change in my heart rate once the CVP part of my cocktail is completely out of my body. At that time if my heart rate stays the same as it now or gets any worse, he will re-evaluate if the rituxan is the culprit. He said he might have me get a heart test/stress test, etc if he deems it necessary. Anyways...right now he feels I'm very stable and in pretty good shape after just finishing 6 rounds of chemo and for the time being plans to just keep a close eye on a couple of things, which will be done every two months when I get the R-fusion, blood work and onc checkup. So...as far as I'm concerned...I'm wayyyy "gooder" than I was last June and that works for me!
Take care and thanks again for caring and posting your comment...
Love...Sue (FNHL-2-3A-6/10)Stable

yesyes2
Posts: 462
Joined: Jul 2009

Hey Sue,

So glad everything went well for you at your onc appointment. It certainly sounds like your onc is good at explaining everything to you and has a clear plan of treatment. That is so important, in my opinion. Being stable is still very very good. And perhaps the Rituxan will get you to remission. Most important it sounds like you are good with where you are at currently. And remember, that even though I'm in remission, life is still wait and watch. I am reminded of that every 3 months when I see my Onc.

I was on every 8 weeks Rituxan from May 2008 until June 2009 when I had my recurrance and became possibly Rituxan refactory. However, I still received Rituxan with my CHOP because my docs felt my results would be better. And I still get Rituxan for my RA. It isn't used in aggressive lymphomas. I had no problems receiving it every 8 weeks other than being tired for a day or two after treatment. Like Winn, I no longer get tired from my treatments, go figure.

I love Mexican food, you made me so hungary, better go get some lunch, LOL.

Leslie

truckingalong
Posts: 444
Joined: Aug 2010

Hi, Winthefight,

So glad to hear you are doing well. Enjoyed reading your posts.

Hi, Sue,

Thanks for wishing me well when I had my last chemo last week - yeah!! But gotta be patient for the effects to go away. Speaking of the effects, I hope your heart rate would return to normal much sooner - same as mine. Didn't realize that it will take couple months? Knowing your treatments are different from mine - it is with great interest to see how you are doing and always learn something new that I do benefit knowing about. Sure wish you much luck! This Monday, I will have ECHO test then PET/CT scan (huh AGAIN!) on Feb 15th - results to be discussed on the 23rd. This is becoming routine I guess...Keep you posted.

Hugs,
Liz

yesyes2
Posts: 462
Joined: Jul 2009

Win, It's so good to hear from you and hear that you are doing well. I wasn't sure if you were still on the boards or not. Take care and blessings to you. Leslie

winthefight's picture
winthefight
Posts: 162
Joined: Dec 2007

Hi Leslie,

Yes, I am still hanging around CSN. I am doing well on my maintainance of Rituxin. Thank you for you concerns. You are such a wonderful person.

Deb S
Posts: 11
Joined: Jan 2011

Hi Sue,

I know you wanted to hear your were in remission, but to be stable sounds pretty good to me. I've read such great info on Rituxin (but hadn't heard of heart issues), perhaps it can shrink that one stubborn tumor to an acceptable size. Hang in there, and enjoy life!

Love, Deb

onlytoday's picture
onlytoday
Posts: 596
Joined: Jun 2010

Sue,

Glad to hear that you are stable! Sorry you didn't hear the "R" word however from your posts it sounds to me that your doc is on top of this! His plan makes sense. Rituxan is a miracle drug for lymphoma and hopefully it will help to shrink the tumor. So enjoy and know that we are all with you on this journey! Your attitude and positive energy inspires all of us! Keeping you in my prayers.

Love,

Donna

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

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