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

Hi Guys..
Well...The results of my CT scan show NO CHANGE in tumor size since my last scan on Oct 20th. The newest scan is identical to the Oct scan except now it shows..BOWEL: a few scattered diverticula of the sigmoid colon. This wasn't present in Oct,so it's a new finding. I looked up diverticula of the sigmoid colon and it isn't anything to worry about..very common and no treatment needed except adding more fiber in my diet. Thats no biggie. So..I guess the good news is that the cancer hasn't gotten any worse or spread to any organs. But...the tumors haven't shrunk any further since Oct. I guess now I just have to wait until Tuesday and hear what my Onc has to say. My questions of course are..
1)Did the chemo stop working at round 3?
2)Is more chemo needed to shrink the tumors?
3) Do we need to use a stronger chemo, or just wait and watch?
???????????????????????????????....lots of them!

Anyways.....needless to say, I wanted to see something on the results that said the tumors were shrunk completely, or 90%-80%-70% or at least more than the 50%. Unchanged to me means NO PROGRESS...right? Well...I don't know if this necessarily means bad news today, but I can't say I'm thrilled about what I read. Anyways...thats the scoop...UGH! We will just wait it out until Tuesday..no biggie I guess.
Love...Sue (FHNL-2-3A-6/10)

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

SUE,
HOW ABOUT THE ACTIVITY? I BELIEVE THATS WHAT THE BOTTOM LINE IS. JOHN

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

Hi John,
I will get blood work done on tuesday, so that will probably shed more light on whats going on....right? Did your scan report note "activity"? None of my scans have "activity" written anywhere, so I don't know what else I should be looking for. I compared scan 2 against scan 3..line by line and they are identical..exact same numbers in tumor size...NO CHANGE noted in all areas. The ending conclusion/impression reads exactly like scan 2. No progress after round 3 of chemo. It's all ok...I'm not freakin out...just disappointed. Sue (FNHL--2-3A-6/10)

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

Hey Sue, I remember that I showed nooooooooo progress till my very last round of chemo which was 8, on the positive side they are not growing. Stay positive, try not to get down! Love Ya Vinny

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

I was so thinking it would be gone. I know you are disappointed but wait to you hear what the Dr says. he might have a good explanation and a good plan to get rid of it for good. Thinking and praying for you Sue

yesyes2
Posts: 592
Joined: Jul 2009

Oh Sue, I have been waiting for your results all day and than missed your posting. I'm sure you are very disappointed and am so sorry that your results from the chemo were not what you were hoping for. The positive news however is that there was no progression and the tumors are stable. All you can do is wait for Tuesday and see what your doctor recommends. I know it won't be easy but do try to relax, eat a good dinner and have a good nights sleep. My love and prayers are going out to you.
With blessings,
Leslie

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

Sue,
Well this stinks. I'm sorry to didn't get better news today but like others have said I guess now you need to wait to see what the doc says. And atleast it hasn't progressed... that's good!! No that's GREAT!
So my prayers go out to you. We're all with you during this agonizing wait. (so hard!) You are not alone.

Love,

Donna

NMZ NHL Stage IV 0/10 REMISSION 01/11/11

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

Sue,

I am sorry you didn't get great news today, but I'm like John. No activity? That's what I watch for. I know waiting to get your questions answered is torture, but honey you've been through MUCH worse.

I do know there are no black and white answers though. With my last scan the SUV was down, but the tumor in my lung is still visible but not lighting up. So what does that mean? It's not active at least to my knowledge. I did have another drenching sweat and we'll keep watching and waiting. It's ok. I feel good, not dropping weight and we'll just wait and see.

Write your questions down so you don't go into overload. You've come so far sweetie, don't let the monster back into your brain. You ARE winning the fight my dear! Every day, Every moment, and with every breath!

Take care!
Beth

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

Sue,

I too am very sorry that the results weren't what you had hoped for. Like John said, it's the activity that counts too. On Tuesday, your Onc will be able to take your latest LDH into consideration along with your symptoms and the scan results.

When we all say that we know that the wait until your appointment on Tuesday will be a long one; we all really know how long it will be and how hard it will be to get through every hour until you see your Onc. I will be praying that you find peace and some degree of calmness in these next few days. Kellie

miss maggie
Posts: 929
Joined: Mar 2010

Hi Sue,

I am so sorry the scan results were a disappointment. I agree with the previous posts, at least there is no activity in any other organs in the body. I know you expected the tumor size to be gone or at least shrink somewhat. Is it possible the 2 scans were too close together, and possibly round 3 is still working? I know my oncologist told me treatment usually lasts 3 months or more in the body? Just guessing of course. Every treatment is different, as every patient is different. I was on Rituxan only.

I am sure when you see the oncologist on tuesday, he will be more optimistic with the results of the pet scan.

Love Maggie

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

Just read your post and want to ask you how you are doing? I understand the disappointment you must feel but as the others have said your MD will be able to answer your questions and will guide you going forward. The activity question cannot be answered without a PET scan and you just had the CT right? I chased my remission for a year and a half before they found the exact type of treatment I needed. You have just scratched the surface of what is available to you. You have an enormous amount of strength and I know all will work out for you. I'll be waiting to hear how your MD appointment goes and I along with everyone else will be right here to offer support whenever your need it. Take extra good care of yourself over the weekend, remember to breathe and know that the answers are there, trust me. Love, Mary

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

Hi Sue,
Thats a lot of info. I would try to stay focused since there is no change in a negative way. As far as 'activity' that would show on a PET scan. CAT scans just show the inside of you. So, my take right now is that this is not bad news. Just unchanged, which is VERY good news. Try no to worry to much, Tuesday is still a few days away. I am here for you when ever you need me. I'm sure all the rest of the gang is here for you too.
Always in my thoughts and prayers,
Lisha

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

Now I understand why I didn't read or see anything written about "activity" on my CT scan! Only a PET scan shows if there is activity.... Thank you ladies...I have been sitting here re-reading all 3 scans trying to find something that showed "activity" and just wasn't seeing anything. Steve read the results twice and he couldn't find anything either. I'm really fine..seriously. I was very pleased with the majority of the scan results...such as "No abnormality identified" in my-liver,gallbladder spleen,pancreas,cardiac anatomy,kidneys,bladder,bone anatomy, etc, etc. Love love love seeing all of my major organs are still nice and clean. I'm not going to stress out..I promise!

Lisha....I sure hate to hear that you will be taking the nasty pppppppred for your shoulder pain! I can hardly say the word... Yucky poo, girlfriend. I'm sure the dose you take for your shoulder will be way lower than what they make us take with chemo..right? I'm here for you too sweetie....glad to hear your home is quiet again and everyone has gone home.

Thanks for all the love and concern from all of you...such a wonderful bunch of good buddies I have with all of you!!! All is going to be good!
Love...Sue (FNHL-2-3A-6/10)

yesyes2
Posts: 592
Joined: Jul 2009

Hi Sue, Mary and Lisha are right, if you have been having CT scans there is no SUV (activity) given. Did you have a PET Scan when you were first diagnosed? If you did perhaps another PET is in order to see just how active your nodes are. It is possible for them to show up on a CT as enlarged but have normal activity levels on a PET. John is correct that the activity is what some doctors look for. Worth asking the question of your onc. Probably by Tuesday you will have a book of questions.
Thinking of you,
Leslie

yesyes2
Posts: 592
Joined: Jul 2009

I was posting same time as you Sue so some of my above post you are already aware of.
Toodles, Leslie

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

Hi Leslie...I've had 3 CT scans..one in June to determine if I had Lymphoma....Oct 20th after my 3rd round of chemo to see if the tumors were shrinking...and then this last one on Tuesday. I've never had a PET scan. I will ask my doctor about PET scan versus CT scan and why he is only doing Ct's. I've never even had SUV (activity) mentioned to me by my doctor..???? Much to write down and discuss...Thanks Leslie...Love..Sue (FNHL-2-3A-6/10)

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

This could possibly be part of the problem. If the nodes show activity or in other words are busy and growing then the chemo will have a good chance of destroying them. If there is no activity the chemo cannot work there....nothing to work on. That is why it is easier to treat the more aggressive types of Lymphoma..there's lots of activity or cell division. Enlarged or inactive lymph nodes= watch and wait. So glad to hear you are doing good as well you should as that was not a bad report at all. Take care. Mary (FNHL-1-2,4A,7/08)

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

I'm about 4 months out of treatment and I still show I have around 4 cms of tumor in my mediastinal cavity, but like EVERYONE before me you need to have a PET scan done to see about the activity because thats what matters. A person can have a dozen tumors but it means absolutely nothing if they are not active. Definitely talk to your oncologist, I'm sure he will reassure you on everything, Take Care and God Bless!

miss maggie
Posts: 929
Joined: Mar 2010

Hi Tracey,

Through out the years,I have so much information stored in my brain. But, sometimes I have to be reminded of that info. Yes, yes, dozen tumors, but it means nothing is they are not active. Thanks for the reminder.

Love Maggie

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

HI Sue - not much I can add that hasn't been said but ditto from FL. I've been anxiously waiting to hear your results and so very, very sorry you had the same outcome I did (mine was about a 40% improvement)when my CVP-R was over. Big tumor went from 12 cm to 8cm - needs to be down to a 2 or lower. I hoped for a much better result for you.

I was given a one month reprieve while Moffitt (Tampa)decided which Chemo to try next. I wasn't ready to begin so soon, but they said it was necessary. Please ask your Dr. about Treanda/Bendamustine if he suggests further chemo. The normal one to move to next is CHOP but if you compare the two (Treanda was only used as a second line chemo until last Aug. when it was approved as second line - that doesn't matter to you or I since we are both second anyway) the success rates are much higher. About 74% reach Remission with it compared to around 55% with CHOP. It's a two day chemo and not pleasant, but if it's doing the job I will put up with it. Will let you know Feb. 4 after CT scan on 1/31 if it's working. We're ALL praying for you and will be looking for your post on Tuesday - Fran

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

Hi Fran,
My tumors are measuring in mm..8-11-7, not cm's...so maybe they are small enough now where they won't require more treatment? Others in the group have said "activity" is whats important, not tumor size so much, and since I haven't had a PET scan to see if anything is active, I'm assuming a PET scan should be done next before trying a new chemo. I'll be asking all of these questions on Tuesday. I sure hope your CT scan shows shrinkage....keeping my fingers crossed and prayers coming your way!
Love...Sue (FNHL-2-3a-6/10)

yesyes2
Posts: 592
Joined: Jul 2009

Hi Sue,

I just came from the 2010 ASH meeting in San Francisco, just got in 1 hr ago and still havn't unpacked. Just needed to see how everyone is doing. Anyway, I'm no oncologist but lymphnode size did come up during the question and answer session. The Hemo/Onc from UCSF said on a CT scan any lymphnode 1.2 cms or smaller is considered a normal sized node. And that the only way to tell if a small node is cancer is to do a PET/CT. If your nodes are in mms than that could place you in remission if what she said is correct as your lymphnodes are not going to disappear, just revert back to normal size. under 1 cm. So I'm confused, if your nodes are in mm why were you not deemed in remission based on your first scan? What made your oncologist still think you had cancer at that time? I hope this info is of some help. There is lots of exciting things coming down the pike.

Blessings,
Leslie

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

Leslie,
What are these exciting things? (FNHL-1-4A-5/10)

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

Got me so excited I forgot to sign my name. John

yesyes2
Posts: 592
Joined: Jul 2009

John,

It was so cool to see doctors excited about new treatments for PTC lymphomas which have not very good treatments, new and positive treatments for Mantle cell, new treatments for first line DLBC, possible new drugs for relapsed lymphomas after sct failure. Sorry that I don't have anything on indolent lymphomas as I went to aggressive lymphoma breakout sessions as my lymphoma is aggressive. I wish I could have atleast remembered to pick up the session slide fact sheet. Did anyone out there also attend the ASH meetings or follow on the internet last December? When the LLS did the internet session I was getting my CT so couldn't participate but there should be podcasts available fairly soon. John, you should get on the mailing list so you can join in, think you would enjoy it. Really informative.

Perhaps I spend too much of my life educating myself on this dang nabbit disease. Do you think, LOL.
Leslie

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

Hi Leslie,
After reading your post when you got home from the meeting in SF, I got on the phone and called my chemo buddy and aked her if she remembered my doctor saying anything about remission when he read my 2nd scan results in Oct. She said.."no, he didn't, but he was very pleased with the 50% shrinkage of the tumors and said the next 3 rounds of chemo should put me there". She said he never once mentioned anything about the tumor size being normal either. So...maybe Tuesday he will say I'm in remission since my tumors are so small??? You said.."the only way to tell if a small node is cancer is to do a PET/CT."...so I still need to get a PET scan...right? Well...I guess speculating won't help any, so I'll just give him a copy of your post on Tuesday and have him answer your question for me. This guys got some splainin to do..ha!....seriously..you've got me wondering.."big time". I didn't know normal size nodes are 1.2 cm or smaller. Some..(not all) of my tumors were that small back in June when I had my first CT-scan done. No-one said they were "normal" then...whats up with that??? Oh well...Tuesday will be here soon and I WILL get my questions answered. Thanks for the info Leslie..I appreciate you posting. Love..Sue (FNHL-2-3a-6/10)

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

Lets not forget one important piece here. On a CT scan with contrast(dye),any lymph node that enhances,lights up,glows, whichever term one uses,regardless of it's size, is a red flag for cancerous activity. The PET will show how much activity and is a great tool in staging, grading etc. Inactive nodes I believe do not enhance. Sue I don't expect you to know if there was enhancement of the nodes on your latest CT unless it happens to say in terms we can understand. I don't want you to feel you have necessarily been short-changed either. Your CT's showed enough to warrant treatment or it wold not have happened. But certainly do ask why a PET was not deemed necessary in your case. So many of these tests are really hard on the kidneys and could possibly have been a factor(just sayin). Just a few more things to add to your notebook as mine own is full!! LOL Take care and good luck. (I wish I was going Tuesday. I have to wait til Friday). Mary

yesyes2
Posts: 592
Joined: Jul 2009

Thanks Mary for your wonderful, as always information. Forgot all about the contrast used in CT scans. I mentioned to Sue a CT I had years ago that showed a 1 cm node which Onc deemed normal. However I just remembered that that scan was done without dye, I was afraid of the dye and said no to it. Silly me. And Sue, these current nodes were 50% larger before the chemo, right?
Thanks again Mary for your spot on insight and information.Blessings,
Leslie

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

Hi Mary and Leslie,
YES...all 3 of my CT scans were done with contrast dye and YES Leslie..the nodes were 50% larger before Chemo. I still have blood work to be done Tuesday morning before I see my Onc, so when you think about it, he really has quite a bit of information yet to be shared with me. I'm thinkin positive here and really have a feeling that I'm going to hear the big 'R" word. Seriously...I feel pretty darn good about all of this. Well....need to get off of here and settle in for the Bears and Packers game. The Bears beat our Seahawks last week..(boo hoo)...but this week we want them to beat the Packers. Feels weird to be cheering for the Bears after wishing them major defeat, failure and pain last weekend..hahaha!! Love ya all...Sue..(FNHL-2-3A-6/10)

truckingalong
Posts: 444
Joined: Aug 2010

Hi, Sue,

Been reading all this and thinking of you for the Big Tuesday, I will have my last chemo also on this day. I DON'T want to go there as I know I will get real uncomfy with side effects and even perhaps some more damaging physical effects. Well, girlfriend, we gotta keep our chins up and hope for the best for Tuesday!! I hope you will get good feelings meeting with your onc and get the satisfaction with the answers you are looking for and with your strength, you will be moving forward and do well.

Hugs,
Liz

yesyes2
Posts: 592
Joined: Jul 2009

Hi Sue,

It's good to ask you Onc all of your questions. Just keep in mind that I'm not a doctor, so don't have any clue what the radiologists deem as suspicious. I do know that long before I had NHL I had a node that measured 1 cm which was noted on a CT. My Onc said he would not do anything about it because under 1 cm was normal sized. Also, the only definitive way to know for sure if something is cancer is to do a biopsy, and with lymphoma you don't biopsy every node. I also think even if small, if they are clustered that is also a concern. I sure hope I didn't make things more confusing. I just get way too excited about new knowledge, LOL.

Love you,
Leslie

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

This is what I mean about this board being so full of info. I always tell the new ones to avoid the websites because so much info can be gotten right here. Its always best to get it from the people that are involved in the treatments and diagnoses. Thanks for all the input everyone. John(FNHL-1-4A-5/10)

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

Fran,
Do you know what the activity of the tumors were? John(FNHL-1-4A-5/10)

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

I remember when I got my original results of cat/pet/mri's last summer. My doc in NY said that I had enlarged nodes in the back of the pelvic area BUT no activity in all but one groin node and in the bone marrow. Interesting that now my doc didn't even bother to scan me (she is very very conservative with treatment and scans, which is fine with me)because indolent very often will not show activity on a pet because there isn't enough activity to light up on the scan. So my Remission was determined by symptoms (or lack of them) and blood work. My doc said that with my various levels as good as they are we are there. She is against any scans that are not absolutely necessary, because she feels that exposes us to more harmful things.

I guess each doc has there own way of treating us and making determinations. I know my doc is very big on personalization. What might be great for one patient will not be right for another , even with very similar disease.

So when I think about this it all comes down to sharing of info with all of you guys and also trusting in our respective docs. Questioning them for sure (which I do all the time)but untimately trusting that they hear us and are doing what's right for us.

So that's my 2 cents on this.. haha

Love you all,

Donna

NMZL stage IV 05/10 REMISSION 01/11/11

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

John - Yes, I found out the activity of my tumors just because of all the postings on this site last week! Hadn't been discussed by my Dr. but my engineer hubby who LOVES medical research went back into my files and found Jan. '10 from my PET scan (only PET I've had - all other's CT). It reported then (before my CVP-R chemo last summer) "neck shows intense increased activity in the posterior of the tongue with an SUV of 5.4. This is suspicious for abnormal activity in the lingual tonsil." This was too high if normal is 2 to 3. This area dropped to the lower numbers after summer chemo.

Oct.'10 between chemos states from the CT scan "There remains intense activity within mesenteric mass located just inferior to the pancreas. This conglomeration has SUV's between 13 - 15 and is unchanged in appearance in comparison with the CT scan of 7/20/10." So - we learned CVP-R helped the tongue and tonsil activity, but did nothing for the 8.5 cm grapefruit size tumor in my abdomen. Praying hard the Treanda I'm on now is doing it's work - thanks for asking! What does all this mean to you? Fran

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

Fran,
It is strange how we all react differently to the same treatment even when our diagnoses are so close. MY activity went down by half or a little more at my mid scan. There was also shrinkage of the tumors. My last pet scan showed no suv activity at all. Just can't figure out why it works so much differently on various people. Just glad they have other treatment plans available. I have heard good things about the Treanda and hopefully that will do the trick. It appears to me the r-cvp just was not the treatment for you. Thats why they start out just trying different treatments and hope they hit the right one the first time. I know how tiring the chemo is and the disappointment has got to be worse,but the treanda should do the job,hopefully. Keep us updated on any reports. John(FNHL-1-4A-5/10)

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