Mailman came..

allmost60
allmost60 Member Posts: 3,178
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)
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Comments

  • JoanieP
    JoanieP Member Posts: 573
    Oh Sue
    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
  • COBRA666
    COBRA666 Member Posts: 2,401
    ACTIVITY
    SUE,
    HOW ABOUT THE ACTIVITY? I BELIEVE THATS WHAT THE BOTTOM LINE IS. JOHN
  • yesyes2
    yesyes2 Member Posts: 591
    JoanieP said:

    Oh Sue
    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

    Dang Nabbit!!
    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
    onlytoday Member Posts: 609 Member
    Oh boy
    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
  • KC13167
    KC13167 Member Posts: 215
    Been Waiting...
    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
  • dixiegirl
    dixiegirl Member Posts: 1,043
    onlytoday said:

    Oh boy
    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

    Oh man
    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
  • miss maggie
    miss maggie Member Posts: 929
    scan results
    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
  • allmost60
    allmost60 Member Posts: 3,178
    COBRA666 said:

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

    Activity
    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)
  • merrywinner
    merrywinner Member Posts: 626
    Hello there Sue!
    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
    forme Member Posts: 1,161 Member
    Oh wow
    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
    allmost60 Member Posts: 3,178
    forme said:

    Oh wow
    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

    Now I understand...
    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
    yesyes2 Member Posts: 591
    forme said:

    Oh wow
    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

    Some Thoughts
    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
    yesyes2 Member Posts: 591
    yesyes2 said:

    Some Thoughts
    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

    Posts Crossed
    I was posting same time as you Sue so some of my above post you are already aware of.
    Toodles, Leslie
  • allmost60
    allmost60 Member Posts: 3,178
    yesyes2 said:

    Some Thoughts
    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

    CT scan only...
    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
    merrywinner Member Posts: 626
    allmost60 said:

    CT scan only...
    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)

    Soooo
    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
    Tracie1981 Member Posts: 125

    Soooo
    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)

    About the results
    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!
  • vinny59
    vinny59 Member Posts: 1,032
    allmost60 said:

    Activity
    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)

    Sue
    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
  • miss maggie
    miss maggie Member Posts: 929

    About the results
    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!

    Inactive tumors
    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
    cookingirl Member Posts: 183
    Mailman came....
    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
    allmost60 Member Posts: 3,178

    Mailman came....
    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

    Thanks Fran..
    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)