Unexpected

We went to Bill's oncologist routine visit to check his ct report and to hear that he was still in remission (2 yrs) and get ready for his last rituxan infusion tomorrow.  Well.......it didn't turn out exactly that way.  They found a 3x8 cm cluster of lymph nodes in his abdomen that were not there before.  He is scheduled for a pet scan on Friday and we will see the doc on Tues next week.  He is pretty certain that the Mantle Cell is back but said it's a slight possibility it could be something else.  He just got over that bug that has been going around and he had it for 4 weeks.  That's a flicker of hope but we're not holding our breath on that one.  It will be a long week.

Becky

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Comments

  • Shoopy
    Shoopy Member Posts: 210
    Unexpected

    Bill and Becky

    I pray that it has not returned and is just some sort of anomaly.  I will keep you in my prayers!

    Karl

  • allmost60
    allmost60 Member Posts: 3,178
    Going to think positive...

    Hi Bill and Becky,

      Well darn...that's not something you wanted to hear, but hopefully the bug Bill had is the culprit causing the cluster of nodes. It doesn't hurt to think positive until more is known. I'm so sorry you have to deal with new testing and waiting for results...it's the very thing we all pray won't happen after we are done with treatments and in remission. My heartfelt prayers and positive thoughts will be with you while you wait to find out more with whats going on. God bless you both.

    Love...Sue   (FNHL-stg3-grd2-typA-Dx-6/10-age 63)

     

  • COBRA666
    COBRA666 Member Posts: 2,401
    Oh Crap, I didn't want to

    Oh Crap, I didn't want to hear that. It may be due to him being sick before. You know the lymph nodes swell when we get sick. What does concern me is we are talking about cm's and not mm's. Of course I am not a Dr. and don't really know. I sure hope it hasn't returned. Be thinking of you and Bill until you find out what it is. John

  • illead
    illead Member Posts: 879 Member
    COBRA666 said:

    Oh Crap, I didn't want to

    Oh Crap, I didn't want to hear that. It may be due to him being sick before. You know the lymph nodes swell when we get sick. What does concern me is we are talking about cm's and not mm's. Of course I am not a Dr. and don't really know. I sure hope it hasn't returned. Be thinking of you and Bill until you find out what it is. John

    Karl, Sue and John

    Thank you so much for your support and caring.  Boy I never realized how much it really meant as when I first found this forum Bill was already in remission.  I think I'm still in shock.  Think you know Karl, you had a real scare yourself and now facing the SCT.  Your words are always so gracious Sue and I know they are heart felt.  Who knew John, this was supposed to be  "going through the drill"  What makes MCL so scary is that the relapse is hard to deal with.  They have some options but none are tried and true.  His onc says he will confer with UC Davis (they are affiliated with them) and also Stanford and others, so Bill is in good hands.  He is the forever optimist, we only need one basket case in this household Wink.  Besides the cluster which in whole is in cms., there is one outside of it that is only 7mm.  The cluster seems pretty large for a flu bug though, but what do I know?  We both appreciate your wonderful words of support.

    Bill & Becky 

  • COBRA666
    COBRA666 Member Posts: 2,401
    illead said:

    Karl, Sue and John

    Thank you so much for your support and caring.  Boy I never realized how much it really meant as when I first found this forum Bill was already in remission.  I think I'm still in shock.  Think you know Karl, you had a real scare yourself and now facing the SCT.  Your words are always so gracious Sue and I know they are heart felt.  Who knew John, this was supposed to be  "going through the drill"  What makes MCL so scary is that the relapse is hard to deal with.  They have some options but none are tried and true.  His onc says he will confer with UC Davis (they are affiliated with them) and also Stanford and others, so Bill is in good hands.  He is the forever optimist, we only need one basket case in this household Wink.  Besides the cluster which in whole is in cms., there is one outside of it that is only 7mm.  The cluster seems pretty large for a flu bug though, but what do I know?  We both appreciate your wonderful words of support.

    Bill & Becky 

    Clusters

    Becky,

      Thats the way it was when they found my Follicular. I can't remember the size, but it was in a cluster in my abdomen. I had R-cvp and I am not kidding you, I could feel the lump on my left quadrant(close to the middle) feeling softer and mushier that night. It was still there, but instead of a hard ball it felt like more like a soft rubber ball. By my 2nd or 3rd round I could not feel anything. After my 3 month PET scan it was down more than 50%. I know very little about Mantle Cell except from the little I read here. The good thing is they are coming so far with treatments. We have to wait to see for sure what you and Bill are facing first. Don't want to put the cart before the horse. John 

  • jimwins
    jimwins Member Posts: 2,107
    Hi Becky

    Like others said, I hope it is some sort of anomaly and the PET scan will be clear.  I am keeping you guys in my thoughts. 

    Hang in there and please keep us updated.

    Hugs - Jim

  • Rocquie
    Rocquie Member Posts: 858 Member
    Unexpected

    Well, Becky and Bill, it sure will be a long week! I know that is not news you expected or wanted to hear. Bless you both. None of us here wanted to hear that either. I know your faith is strong and that will comfort you.  I will also pray for you both. 

    (((Hugs)))

    Rocquie

     

  • laugh

    Needless to say this is disturbing to everyone however I have been impressed more than you know by your optimism and great sense of humor. Keep laughing and things will go your way! All my best. I will be thinking of you.

  • illead
    illead Member Posts: 879 Member
    unknown said:

    laugh

    Needless to say this is disturbing to everyone however I have been impressed more than you know by your optimism and great sense of humor. Keep laughing and things will go your way! All my best. I will be thinking of you.

    To all of you

         I have to say that we are really bowled over by the support that you all have sent.  I have to admit something, I have been a little concerned about the lack of commenting lately, although I really understood, none of us can be "up" all the time.  I think it has just happened all at once.  It got to the point that I was thinking maybe it was me, ( we women are just nuts  aren't we?, always overthinking).  I just thought I may as well not even try anymore.  I know, very stupid.  I apologize to all of you.  You are truly a a great group of people and we will treasure and reread your comforting words often.  Jim, you have been such a grounding influence to everyone, and Roquie, a fragile rock. Thank you for noting our faith, it's always being tested isn't it?  GKH, always there and what sweet observations you have.  It really means so much.  I don't mean to sound over dramatic, but for those who do not know, MCL is one of the newest, and worse lymphomas there is.  Only about 3000 new cases a yr and little information.  The prognosis is that it is incurable, and will always relapse.  Once that happens there is little hope.  That has changed however, there has been a lot of progress since then but it still remains incurable, and not much known for long term, although there are new meds and one just came off trials only for MCL.  Although the hopes are for other lymphomas and leukemia, it was pushed through for MCL only for the moment because of the dire need.  Bill was given a chemo that had just recently been taken off of trials and his recovery was dramatic.  He was called the "miracle man" at the cancer center.  It was obvious today that his onc was even shook up.  So although we were always guarded, we were hoping for more time before a relapse.  So sorry for the droning on, it was just a real blow.  Bill is fine though, still feeling great and it will take a mac truck to get him down, his glass has always overflowed!  Tonight was much better for me, it's amazing what a "strong" Maker's Mark old fashion and the Westminster Dog Show will do Laughing.  One more thing is that until we know for sure we are only sharing this with our son and a special couple that we love very much, and you.  We feel it will be too much for some, so more prudent to wait for the correct info.  Thank you for being there.

    Bill and Becky

  • Joemory21
    Joemory21 Member Posts: 41
    illead said:

    To all of you

         I have to say that we are really bowled over by the support that you all have sent.  I have to admit something, I have been a little concerned about the lack of commenting lately, although I really understood, none of us can be "up" all the time.  I think it has just happened all at once.  It got to the point that I was thinking maybe it was me, ( we women are just nuts  aren't we?, always overthinking).  I just thought I may as well not even try anymore.  I know, very stupid.  I apologize to all of you.  You are truly a a great group of people and we will treasure and reread your comforting words often.  Jim, you have been such a grounding influence to everyone, and Roquie, a fragile rock. Thank you for noting our faith, it's always being tested isn't it?  GKH, always there and what sweet observations you have.  It really means so much.  I don't mean to sound over dramatic, but for those who do not know, MCL is one of the newest, and worse lymphomas there is.  Only about 3000 new cases a yr and little information.  The prognosis is that it is incurable, and will always relapse.  Once that happens there is little hope.  That has changed however, there has been a lot of progress since then but it still remains incurable, and not much known for long term, although there are new meds and one just came off trials only for MCL.  Although the hopes are for other lymphomas and leukemia, it was pushed through for MCL only for the moment because of the dire need.  Bill was given a chemo that had just recently been taken off of trials and his recovery was dramatic.  He was called the "miracle man" at the cancer center.  It was obvious today that his onc was even shook up.  So although we were always guarded, we were hoping for more time before a relapse.  So sorry for the droning on, it was just a real blow.  Bill is fine though, still feeling great and it will take a mac truck to get him down, his glass has always overflowed!  Tonight was much better for me, it's amazing what a "strong" Maker's Mark old fashion and the Westminster Dog Show will do Laughing.  One more thing is that until we know for sure we are only sharing this with our son and a special couple that we love very much, and you.  We feel it will be too much for some, so more prudent to wait for the correct info.  Thank you for being there.

    Bill and Becky

    Hi

    I hope it turns out to be anything other than a relapse. I will be thinking about you two. 

    Jonathan

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    Praying

    Becky,

    I'll be praying for you two.  I work all night all weekend and cannot ever do much posting here from Friday night until Tuesday morning, but I too have noticed that the Site has seemed very "flat" for the last two months or so; I hope it will pick back up.

    I actually just got back from the oncologist today (Tuesday) and my six-month labs were all normal. I almost feel guilty .  I am now 4.5 years out, and my doc said after a check in six months, I will go to a once-a-year schedule.  Her also gave me info on a Hodgkin's Survivor Group at the hospital that he suggested I join, and I am definitely going to do that in a few weeks. 

    This site has the full spectrum of lymphoma experiences, from the quick and easy, to maintenance for some that last years or even decades, and many other clinical paths that we read and learn about.  What impresses me the most I think are the rough cases that relapse, go to SCT, and then complete remission. I have mentioned my older firend who just passed after 13 years fighting prostate. Most of those years were problem free, and he enjoyed at least 12.5 of those years; he really suffered only about 4-6 months at the end. I regard him as a huge success story.  We have had numerous reports of those who fight the good fight for many years, and it is understandable that people, after cancer fades to the rear of their thinking after years of remission, lose motivation to come to the site very often, but their storys are very much appreciated when they do . 

    The most inspiring person (among many) I've encountered here was surely Dixie Chick. She relapsed so many times, and had received every imaginable treatment, but her spirit was always strong and cheerful, and she described the worst ordeals imaginable as if they were just par for the course. Bless her soul.

    max

    .

  • coachmike
    coachmike Member Posts: 155
    Prayer

    Becky

     

    I am so sorry to hear of this unexpected news. I will pray for Bill that this is only a hiccup from the bug and not something more serious. I also pray for you, as the life of the caregiver is more streesful then the patient at times. My caregiver was my life line and there is no way that I would have been able to get through it all alone. Please take time for you and keep your strength up. You both are in my prayers

    Mike

  • illead
    illead Member Posts: 879 Member
    coachmike said:

    Prayer

    Becky

     

    I am so sorry to hear of this unexpected news. I will pray for Bill that this is only a hiccup from the bug and not something more serious. I also pray for you, as the life of the caregiver is more streesful then the patient at times. My caregiver was my life line and there is no way that I would have been able to get through it all alone. Please take time for you and keep your strength up. You both are in my prayers

    Mike

    Thank you again

    Jonathan, it's nice to have you back and we really appreciate your kind thoughts.  Something I have always wanted to ask you, I hope that tongue is sticking out at cancer Undecided.  Coachmike, thank you so much, I am so happy for you and know that your ordeal has not been an easy one. We also get the report and cd before we see the doctor, but oddly I always want to wait for the doc.  I am so glad we did not read the report before.  I don't think I could bear reading  "recurrent lymphoma should be suspected" and then have to live through the weekend before seeing the doc. Aargh.  Thank you for your kind words and also thank your caregiver, it's a labor of love.

    Max, our friend, we are also so happy for you.  I know how you feel.  We have seen 2 dear friends who we saw often at the cancer center pass away and one who is dealing with pancreatic cancer since Bill's ordeal began.  We too have felt guilty in a way, but it's life, and we are happy when anyone gets 2nd or more chances.  Your words about the fighters were a big encouragement for us this morning.  If it is what we suspect, we will just start the battle again.

    Our thoughts, Bill & Becky

  • COBRA666
    COBRA666 Member Posts: 2,401
    illead said:

    Karl, Sue and John

    Thank you so much for your support and caring.  Boy I never realized how much it really meant as when I first found this forum Bill was already in remission.  I think I'm still in shock.  Think you know Karl, you had a real scare yourself and now facing the SCT.  Your words are always so gracious Sue and I know they are heart felt.  Who knew John, this was supposed to be  "going through the drill"  What makes MCL so scary is that the relapse is hard to deal with.  They have some options but none are tried and true.  His onc says he will confer with UC Davis (they are affiliated with them) and also Stanford and others, so Bill is in good hands.  He is the forever optimist, we only need one basket case in this household Wink.  Besides the cluster which in whole is in cms., there is one outside of it that is only 7mm.  The cluster seems pretty large for a flu bug though, but what do I know?  We both appreciate your wonderful words of support.

    Bill & Becky 

    Burnin' up the puter

      Just to let you know I have been burning up the computer looking up Mantle Cell Lymphoma. I usually do not go to the web nor recommend it because I do not know the date of the articles I am reading. These articles can scare the heck out of you sometimes, but there is no other choice.  John

  • COBRA666
    COBRA666 Member Posts: 2,401
    illead said:

    Thank you again

    Jonathan, it's nice to have you back and we really appreciate your kind thoughts.  Something I have always wanted to ask you, I hope that tongue is sticking out at cancer Undecided.  Coachmike, thank you so much, I am so happy for you and know that your ordeal has not been an easy one. We also get the report and cd before we see the doctor, but oddly I always want to wait for the doc.  I am so glad we did not read the report before.  I don't think I could bear reading  "recurrent lymphoma should be suspected" and then have to live through the weekend before seeing the doc. Aargh.  Thank you for your kind words and also thank your caregiver, it's a labor of love.

    Max, our friend, we are also so happy for you.  I know how you feel.  We have seen 2 dear friends who we saw often at the cancer center pass away and one who is dealing with pancreatic cancer since Bill's ordeal began.  We too have felt guilty in a way, but it's life, and we are happy when anyone gets 2nd or more chances.  Your words about the fighters were a big encouragement for us this morning.  If it is what we suspect, we will just start the battle again.

    Our thoughts, Bill & Becky

    The cancer center

      I don't know about you, but I asked everyone that sat across from me and beside me at my infusions what type of cancer they had. There were 4 people in the large cubicle. I found the majority had breast,colon,prostate and lung. I only found one that had Lymphoma and that was a relapse from 11 years ago. They were not even sure of the sub-type. They were getting treanda(spelling) as a 2nd line of defense. I am sure there were other Lymphoma people there, but I could never find them. I was just looking for someone to relate to that had the same thing as me. It seemed I never saw the same people twice because of the scheduling of the appointments. When I first started asking I would say, "What are you here for?" I would get odd looks, so I learned quickly to ask what "type" are they here for. When I would tell them my type most would ask me what that was because they never heard of it.  John

  • illead
    illead Member Posts: 879 Member
    COBRA666 said:

    The cancer center

      I don't know about you, but I asked everyone that sat across from me and beside me at my infusions what type of cancer they had. There were 4 people in the large cubicle. I found the majority had breast,colon,prostate and lung. I only found one that had Lymphoma and that was a relapse from 11 years ago. They were not even sure of the sub-type. They were getting treanda(spelling) as a 2nd line of defense. I am sure there were other Lymphoma people there, but I could never find them. I was just looking for someone to relate to that had the same thing as me. It seemed I never saw the same people twice because of the scheduling of the appointments. When I first started asking I would say, "What are you here for?" I would get odd looks, so I learned quickly to ask what "type" are they here for. When I would tell them my type most would ask me what that was because they never heard of it.  John

    interesting

    Our cancer center is private cubicles, so not a lot of chatting going on.  It does seem there are more women than men, interesting.  The next time we are there, I am going to ask the nurses about what types of cancer are more prevalent in our area.  I think that is good info to know.  I know most people wonder what lymphoma is, I didn't know myself and I never understood Hodgkins and non Hodgkins.  I always wondered who Hodgkins was, actually I still do Smile.  On top of that there are so many types of lymphoma.  We have so much trust in Bill's onc but he is young and we wonder if he has ever treated MCL.  We are thinking that Bill may be his first case and he was in remission when Bill first saw him.  Now that Bill has maybe relapsed, he seems in a quandry as to what to do,  Think he is happy that it was caught early so he has time to investigate and confer with others  We have every confidence that he will soon become an expert on yet another type of lymphoma. 

    Thanks again for being there John, Becky

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    illead said:

    interesting

    Our cancer center is private cubicles, so not a lot of chatting going on.  It does seem there are more women than men, interesting.  The next time we are there, I am going to ask the nurses about what types of cancer are more prevalent in our area.  I think that is good info to know.  I know most people wonder what lymphoma is, I didn't know myself and I never understood Hodgkins and non Hodgkins.  I always wondered who Hodgkins was, actually I still do Smile.  On top of that there are so many types of lymphoma.  We have so much trust in Bill's onc but he is young and we wonder if he has ever treated MCL.  We are thinking that Bill may be his first case and he was in remission when Bill first saw him.  Now that Bill has maybe relapsed, he seems in a quandry as to what to do,  Think he is happy that it was caught early so he has time to investigate and confer with others  We have every confidence that he will soon become an expert on yet another type of lymphoma. 

    Thanks again for being there John, Becky

    Dr H

    Dr Thomas Hodgkin was an English MD in the 1800s who discovered the types of cells in the Hodgkin's strain of lymphoma. It is the presence or absence of these particular cell types that determines whether a lymphoma is Hodgkin's or non-Hodgkins.

    http://en.wikipedia.org/wiki/Thomas_Hodgkin

     

  • illead
    illead Member Posts: 879 Member

    Dr H

    Dr Thomas Hodgkin was an English MD in the 1800s who discovered the types of cells in the Hodgkin's strain of lymphoma. It is the presence or absence of these particular cell types that determines whether a lymphoma is Hodgkin's or non-Hodgkins.

    http://en.wikipedia.org/wiki/Thomas_Hodgkin

     

    Got it Professor

    Now it's just remembering it!Embarassed Becky

  • illead said:

    interesting

    Our cancer center is private cubicles, so not a lot of chatting going on.  It does seem there are more women than men, interesting.  The next time we are there, I am going to ask the nurses about what types of cancer are more prevalent in our area.  I think that is good info to know.  I know most people wonder what lymphoma is, I didn't know myself and I never understood Hodgkins and non Hodgkins.  I always wondered who Hodgkins was, actually I still do Smile.  On top of that there are so many types of lymphoma.  We have so much trust in Bill's onc but he is young and we wonder if he has ever treated MCL.  We are thinking that Bill may be his first case and he was in remission when Bill first saw him.  Now that Bill has maybe relapsed, he seems in a quandry as to what to do,  Think he is happy that it was caught early so he has time to investigate and confer with others  We have every confidence that he will soon become an expert on yet another type of lymphoma. 

    Thanks again for being there John, Becky

    Infusion center

    My center is in my doc's office. For all the world it reminds me of a men's barber shop. I would guess it has about 12 "barber chairs" its usually pretty full. I woulg guess about 50/50 men and women. I see a lot of people getting rituxan. Only guy I ever really talked to had lung cancer. My biggest shock was how upbeat and pleasant most of the patients. The staff is great.

  • coachmike
    coachmike Member Posts: 155
    illead said:

    interesting

    Our cancer center is private cubicles, so not a lot of chatting going on.  It does seem there are more women than men, interesting.  The next time we are there, I am going to ask the nurses about what types of cancer are more prevalent in our area.  I think that is good info to know.  I know most people wonder what lymphoma is, I didn't know myself and I never understood Hodgkins and non Hodgkins.  I always wondered who Hodgkins was, actually I still do Smile.  On top of that there are so many types of lymphoma.  We have so much trust in Bill's onc but he is young and we wonder if he has ever treated MCL.  We are thinking that Bill may be his first case and he was in remission when Bill first saw him.  Now that Bill has maybe relapsed, he seems in a quandry as to what to do,  Think he is happy that it was caught early so he has time to investigate and confer with others  We have every confidence that he will soon become an expert on yet another type of lymphoma. 

    Thanks again for being there John, Becky

    hopefully it is not a

    hopefully it is not a relapse, but if it is...is a stem cell transplant  a possible route to take?