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  • COBRA666
    COBRA666 Member Posts: 2,401 Member

    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

    Activity vs. size
    Fran,
    Do you know what the activity of the tumors were? John(FNHL-1-4A-5/10)
  • yesyes2
    yesyes2 Member Posts: 591
    allmost60 said:

    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)

    Lymphnode size
    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
    COBRA666 Member Posts: 2,401 Member
    yesyes2 said:

    Lymphnode size
    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

    Exciting things???
    Leslie,
    What are these exciting things? (FNHL-1-4A-5/10)
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    COBRA666 said:

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

    Exciting things
    Got me so excited I forgot to sign my name. John
  • yesyes2
    yesyes2 Member Posts: 591
    COBRA666 said:

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

    Excitment
    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
    allmost60 Member Posts: 3,178 Member
    yesyes2 said:

    Lymphnode size
    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

    Called my chemo buddy...
    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
    merrywinner Member Posts: 626 Member
    allmost60 said:

    Called my chemo buddy...
    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)

    Oh but wait....
    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
    yesyes2 Member Posts: 591
    allmost60 said:

    Called my chemo buddy...
    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)

    Node Size
    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
  • yesyes2
    yesyes2 Member Posts: 591

    Oh but wait....
    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

    Right ON
    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
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    yesyes2 said:

    Node Size
    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

    Information
    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)
  • allmost60
    allmost60 Member Posts: 3,178 Member
    yesyes2 said:

    Right ON
    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

    Right On..
    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)
  • onlytoday
    onlytoday Member Posts: 609 Member
    COBRA666 said:

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

    Activity vs size of nodes
    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
  • truckingalong
    truckingalong Member Posts: 445 Member
    allmost60 said:

    Right On..
    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)

    Thinking of you for Tuesday
    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
  • cookingirl
    cookingirl Member Posts: 183 Member
    COBRA666 said:

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

    Activity vs. Size -
    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
    COBRA666 Member Posts: 2,401 Member

    Activity vs. Size -
    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

    Activity vs size
    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)