Just diagnosed with Mantle Cell

illead
illead Member Posts: 880 Member

Hope you are reading this new thread Todd and hope you saw Max's reply on the old one.  First off I do want to say that with you having no symptoms, you may be put on Wait and Watch. When I first heard about it, I was skeptical but now I totally understand and agree with the reasoning.  The thought is that as long as you are being monitored and the MCL stays at bay, it is more beneficial to wait to start chemo right away.  That way you aren't exposed to chemo too early as lymphomas generally don't fall under the category of "must catch it early".  The staging for lymphoma is even different, i.e. stage 4 is not a death sentence, it is mainly a way to see how far the symptoms have gone, so whether it is stage 1 or 4, it usually reacts the same way to chemo.  But, as I said before, there is the Windows trial going on which has been very successful but you have to be newly diagnosed with no prior trearment.  One of the posters here, Joe Costello, was in the trial under Dr. Wang in Houston and he went into remission and Dr. Wang believes he will stay that way for a very long time.  I did a little research and the Cleveland Clinic does work with MCL  I believe one of the doctors is Dr. Hill.  The site is hard to maneuver though, it is called Tausig Cancer center.  You will know more after tomorrow but please consider getting a 2nd opinion, you have time.  Also I don't remember if I answered you about if they remove the node.  Generally no as chemo will usually take care of that, however there are some experts who have been using radiation on them but I don't know any of the parameters.  The only name I know of is Dr Pinnix at MD Anderson.  Other than Tausig I think the closest top cancer centers for MCL is Weill Cornell in NY ( Dr. Leonard (John?) and Dr. Andre Goy (pronounced Gwah) Hackensack NJ.  I would trust either of them, both very passionate to find a cure.  Please let me know when you can how it goes tomorrow.  Also it would be beneficial if you do a little research on the doctors I mentioned.  Just google there name and Mantle Cell Dr. Wang's first name is Michael.

My best,

Becky   

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Comments

  • gottarace
    gottarace Member Posts: 17
    edited August 2018 #2
    Thank you Becky

    Yes, they removed one node. I still have 3 that are large.

    The James in Columbus has seen good results with a few people I know. I really feel great no issues at all. So idk. i'll find out more tomorrow I hope...

    Thank you all

    Todd

  • illead
    illead Member Posts: 880 Member
    Appointment day

    By the time you get this it will probably be tomorrow, so just want to wish you well and know it will be a whirlwind for you so don't worry about posting.  Whenever you get a chance and not rushed, I would be very much interested in what is happening. Becky

  • gottarace
    gottarace Member Posts: 17
    edited August 2018 #4

    Dr today referred me to a Different Dr. Dr Rose. I will see him at 10 am tomorrow. He is a new and bright Dr. He was at the James in Columbus for 7 years, and will consult with the staff of the James. So I will have a Local Dr with resources of the James.  So that does ease my racing mind a bit.

    SO.... I hope to have something locked down as far as what when and where.  Thank you so much Becky.....

     

  • illead
    illead Member Posts: 880 Member
    Sounds good

    I know you are relieved and you look fairly young and healthy and those are pluses.  I am on another forum called acor with only MCL patients and they are all doing well and most in remission for many years. so like I said, no matter what, there is still a lot out there and more research is continuing, so there is constant improvemnt and help. Please keep us posted, I am curious what Dr Rose thinks, it sounds like you are in good hands.

    Becky

  • gottarace
    gottarace Member Posts: 17
    edited August 2018 #6
    Dr Rose update.

    I saw Dr Rose this morning and has referred me to the James in Columbus. The facilty here is very new and is not set up to treat me correctly. Jeff referrede me to Kami Maddocks at the James. She specializes in Blood disorders. He had already contacted her and she discussed r chop,  Methotrexate, and some others. I cant recall what all he said. The James will do the pet scan and marrow testing and what ever else he described. we discused a ballpark timeframe of all this and said I would be off at least 6 month for this process. At that point my mind went blank... Where i work only has short term disability.... I have a wife, a son that starting his 2nd year of Collage this Sunday. I won't have a job....... OMG what am I going to do????? I am 54 and ??? i just don't know.. I was put on an ASAP appointment with the James. But as of my leaving time they had not heard back from the James yet.

    I am Cleared to return to work on Monday from the biopsy.... This is going to be real rough to return to work knowing I'll will  not be working here much longer. Wow.... I am at a loss of words now...

  • illead
    illead Member Posts: 880 Member
    gottarace said:

    Dr Rose update.

    I saw Dr Rose this morning and has referred me to the James in Columbus. The facilty here is very new and is not set up to treat me correctly. Jeff referrede me to Kami Maddocks at the James. She specializes in Blood disorders. He had already contacted her and she discussed r chop,  Methotrexate, and some others. I cant recall what all he said. The James will do the pet scan and marrow testing and what ever else he described. we discused a ballpark timeframe of all this and said I would be off at least 6 month for this process. At that point my mind went blank... Where i work only has short term disability.... I have a wife, a son that starting his 2nd year of Collage this Sunday. I won't have a job....... OMG what am I going to do????? I am 54 and ??? i just don't know.. I was put on an ASAP appointment with the James. But as of my leaving time they had not heard back from the James yet.

    I am Cleared to return to work on Monday from the biopsy.... This is going to be real rough to return to work knowing I'll will  not be working here much longer. Wow.... I am at a loss of words now...

    Hang in there

    I did some research on Kami and found a study on an MCL drug that she did with quite a few doctors who are MCL experts.  some I have mentioned Dr. Leonard and Goy, also Peter Martin and Dr Advani (Bill went to her at Stanford when he relapsed the first time), so Kami must be very well aware and knowledgeable about MCL.  Also she has a community of experts she can call on.  So it sounds like you are in good hands.  She no doubt is doing homework before she sees you and hopefully consulting others.  This is just a suggestion, you may want to mention "wait and watch" and clinical trials i.e. "windows".  I know you are very overwhelmed though so please don't feel I am trying to pressure you.  It is just a thought on my part.  You have so much on your mind right now Todd, I am so sorry.  I am hoping you can work something out with your employer, I have never heard of anyone losing their job because they need medical treatment.  I am sure it has occured, but not often.  Most times patients can work around their chemo even the more harsher ones.  You will know more after your trip to Columbus so try not to despair too much, it will work out somehow.  Another suggestion is that someone needs to go with you (I'm sure your wife is), She should take notes because as you have already experienced, it is easy to forget or get overwhelmed with info even tho you think you are taking it all in.  Also I would write down dates and places and tests etc. you have had already, (a journal so to speak).  I will be thinking about you and your family and hoping for the best.  It is not as ominous as it seems, you have your health and age in your favor and most of all those dear passionate doctors making great headway in finding a cure.

    Becky 

  • gottarace
    gottarace Member Posts: 17
    edited August 2018 #8
    Trying to wrap my head.

    Hi Becky,

    Yes, Dr Rose mentioned Kami and the drug trials she has been a part of. I have taken your words and they have helped me ask questions. I downloaded a VIDEO Diary to my phone today to stat logging what is going on and what the path forward is. I am a Mechanic in the Kenworth Truck factory in Chillicothe Ohio. I work in the TEST DEPT. I drive the truck and fix anything wrong with the truck. Engine, interior, driveline Ect. So being weak is not a good thing. They call us spider monkeys. LOL  I hope The James calls tomorrow... This will blow my 54 year record of never staying overnight in a Hospital. We are NON union at work. We use to have short and long term disablity, But the long term was getting abused by way tooooo many people. Several were off from 5 to 10 years up to 15. So sick days and disabity all got Changed. At the time I didn't care. I have NEVER CALLED IN SICK 1 day in all of my career... Perfect attendance all of my life too, except in 2011 I had to have my left shoulder totally rebuilt. Never did I ever think I would be where I am now....

    Kami has a fine team at the James and excellent contacts with others that want to treat and stop MCL.

    You have been Wonderful Becky......

    Thank you sooooo Much....

    Todd

  • illead
    illead Member Posts: 880 Member
    gottarace said:

    Trying to wrap my head.

    Hi Becky,

    Yes, Dr Rose mentioned Kami and the drug trials she has been a part of. I have taken your words and they have helped me ask questions. I downloaded a VIDEO Diary to my phone today to stat logging what is going on and what the path forward is. I am a Mechanic in the Kenworth Truck factory in Chillicothe Ohio. I work in the TEST DEPT. I drive the truck and fix anything wrong with the truck. Engine, interior, driveline Ect. So being weak is not a good thing. They call us spider monkeys. LOL  I hope The James calls tomorrow... This will blow my 54 year record of never staying overnight in a Hospital. We are NON union at work. We use to have short and long term disablity, But the long term was getting abused by way tooooo many people. Several were off from 5 to 10 years up to 15. So sick days and disabity all got Changed. At the time I didn't care. I have NEVER CALLED IN SICK 1 day in all of my career... Perfect attendance all of my life too, except in 2011 I had to have my left shoulder totally rebuilt. Never did I ever think I would be where I am now....

    Kami has a fine team at the James and excellent contacts with others that want to treat and stop MCL.

    You have been Wonderful Becky......

    Thank you sooooo Much....

    Todd

    Only good thoughts

    Well, the chemo will probably be difficult, but once it's over, you will most likely be back to your old self.  Most lymphomas including MCL react very well to chemo and I am pretty positive that you will immediatly go into remission.  Hopefully your company will understand that.  When is your appt. with Kami?  I am very interested to know what her regimen for you will be. You will be able to figure things out better.  Sounds like you are set up well with keeping track of things and prepared for battle Wink

    You are in my thoughts, Becky

  • gottarace
    gottarace Member Posts: 17
    edited August 2018 #10
    Not set up yet

    i think they will call next week to get the ball rolling. I have a sister by another mother that has worked at several cancer treatment facilities all her life. She has seen several cases but usually in older patient. Told her where I am and no symptoms and she was thrilled..she said they do lots of trails over there in west bend Indiana.

    so I am tryoung  to be positive as I can since I still have no idea what the attack will entail. You will be one of first to hear what the plans are....

    thank you....

    Todd

  • illead
    illead Member Posts: 880 Member
    In your favor

    That is all great news Todd, you are on the right track with a great support system. Now you have a good excuse to relax for a little bit. I have seen this so many times with posters for the first time almost like deer in the headlights because of what they have read on the internet about MCL but then they realize in time that  the future is very positive.  Kick butt!!!!  Is it West Bend or South Bend?  I grew up a short time in S Bend, small world LOL.  Thank you so much for keeping me in the loop.

    Becky

  • gottarace
    gottarace Member Posts: 17
    edited August 2018 #12
    The James

    I will be seeing Dr Kami Maddocks of Thursday at 3 pm. Once we meet I will fill in the blanks I hope.... Have a great week all....

  • illead
    illead Member Posts: 880 Member
    gottarace said:

    The James

    I will be seeing Dr Kami Maddocks of Thursday at 3 pm. Once we meet I will fill in the blanks I hope.... Have a great week all....

    Hi Todd

    I will be thinking of you, try to have a good week with as little stress as possible Undecided

    Becky

  • gottarace
    gottarace Member Posts: 17
    edited August 2018 #14
    Update from th James

    I saw Dr Maddocks at the James on Thursday.

    We now have a plan. I will start my R DHAP next Thursday. It will be 4 cycles on a 21 day turn. So my lsat treatment will be the Day after my Son birthday... Will be a busy week up to Thursday. Echo, port installed, labs, bone marrow biopsy, pet scan then treated on Thursday.. I am still in a daze... I have no idea of what to expect.. I have never been around anything like this and it's coming at me so quick..  Rushing at the house to get so many things done prior to treatments..  It's just me amd Amy.  My son Brett just went back to college for the fall qtr and My Daughter Brittany just passed her boards and is a licensed pharmacist working  full time job in another city.  So i just don't know.... I just don't ever get sick..... Scared not knowing how I will feel in a week??? Going in blind here....

    Todd

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,737 Member
    gottarace said:

    Update from th James

    I saw Dr Maddocks at the James on Thursday.

    We now have a plan. I will start my R DHAP next Thursday. It will be 4 cycles on a 21 day turn. So my lsat treatment will be the Day after my Son birthday... Will be a busy week up to Thursday. Echo, port installed, labs, bone marrow biopsy, pet scan then treated on Thursday.. I am still in a daze... I have no idea of what to expect.. I have never been around anything like this and it's coming at me so quick..  Rushing at the house to get so many things done prior to treatments..  It's just me amd Amy.  My son Brett just went back to college for the fall qtr and My Daughter Brittany just passed her boards and is a licensed pharmacist working  full time job in another city.  So i just don't know.... I just don't ever get sick..... Scared not knowing how I will feel in a week??? Going in blind here....

    Todd

    Likely

    Most likely, Todd, you won't feel any different in a week than you do now. Maybe even a month. WEAKNESS is the most univesal chemo side effect.  Tiredness will very likely hit you first.  I did six months of a different 5-drug combo, and after about 3 cycles (1.5 months of my drugs) thought "this chemo is nothing," and even went back to work. 

    But then the other shoe fell....a few weeks after that, I more-or-less fell apart: sleeping 17  hours a day, profound weakness, and a variety of other side-effects.  I lost my sense of taste, appetite, and then feeling in my hands and feet (neuropathy). I got lung toxicity.  My tear ducts became inflammed and poured water for about two days one time.  I also continuusly felt "weird."  I had a thought or feeling that my blood had been drianed out and replaced with lighter fluid.  My kids were in middle school back then, and one mentioned a few months after I ended infusions that "I no longer stank like chemicals."  Chemo fog (mental confusion, memory loss) occures in about 25% of patients.  Know that most side-effects leave most patients within a few months following treatments. And also notice that I specified most.

    I am not very familiar with DHAP, but this is the usual course for people on a multi-drug set.  Hope for some more good days, but know that every day can bring something different.  And know that Becky remains 'the source" for MCL. And I'm sure we have mentioned to you somewhere above:  MCL is getting new treatment developments faster than any other form of lymphoma. There has been an explosion of new drug options in the last ten years.

    max

    Data for DHAP.   To open, Highlight the link, then right click, then click "Go to....." 

    http://chemocare.com/chemotherapy/acronyms/dhap.aspx

  • illead
    illead Member Posts: 880 Member
    Thinking of you

     I have not heard of R DHAP being used for MCL so I did some research. It is being used a lot for younger patients  who are newly diagnosed. Most of what I read talks about a stem cell transplant afterwards. I am wondering if Dr. Maddocks has been  thinking of that also. I am thinking from what I have read, the side effects are similar to R chop. There have been many treated with that on this forum,  and although it is a rather harsh chemo, there are differing experiences from mild to harsh. Maybe some can shed some light on R chop or Dhap I am really only familiar with Bill’s chemo which was Rituxan/Bendamustine and what he has been on since then.  At any rate Todd, I do believe that you are getting a cutting edge treatment and that you are in good hands.  The sad thing about cancer is that most times no one is prepared, you are suddenly thrown into a world that you have always feared, we have all been there but many times we find it is not as scary  as we thought, it takes time to understand that. I know you feel alone and even more so since your kids are not able to be with you. You and Amy sound like you are great parents, and you should both be proud of that. I am sure your kids will be a great strength and comfort to you both, even if they can’t be close physically. I don’t know if you saw my private msg that I wrote to you yesterday, please look for it. Just tap on CSN email.

    I’m here for you,

    Becky

     

  • gottarace
    gottarace Member Posts: 17
    edited August 2018 #17
    Thank you Max and Becky

    Thank you both!!!!

    Dr Maddocks mentioned Stems, but they have seen good results with R DHAP alone. They are running a trial right now to see if the stems helped longterm or is the R DHAP enought? All I know is info overload... I have so many thing that need done before fall... pool, motorcycle, get tractor and yard ready for winter. Not to mention everything that i do in a normal day. I never set down.. I am always on the go working on projects, hitting the gym then off to work on 2nd shift. I am a mechanic in the test dept of a Kenworth truck factory. we are called spider monkeys because we climb all over the truck and fix ANYTHING that is incorrect or not working. Not use to just setting..  what can I expect? weight loss, sick, I have read so much but know so very little about how I will feel.

    Thank you all again!!!!

    Todd

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,737 Member
    gottarace said:

    Thank you Max and Becky

    Thank you both!!!!

    Dr Maddocks mentioned Stems, but they have seen good results with R DHAP alone. They are running a trial right now to see if the stems helped longterm or is the R DHAP enought? All I know is info overload... I have so many thing that need done before fall... pool, motorcycle, get tractor and yard ready for winter. Not to mention everything that i do in a normal day. I never set down.. I am always on the go working on projects, hitting the gym then off to work on 2nd shift. I am a mechanic in the test dept of a Kenworth truck factory. we are called spider monkeys because we climb all over the truck and fix ANYTHING that is incorrect or not working. Not use to just setting..  what can I expect? weight loss, sick, I have read so much but know so very little about how I will feel.

    Thank you all again!!!!

    Todd

    Older Study

    I was just reading an older study on R-DHAP from 2008.  It was investigating the effectiveness of R-DHAP against aggressive B-Cell NHL.  But toward the end it mentioned that a different study at that time was investigating the effectiveness of R-DHAP agains MCL also. It said in a general way that as of then, it was showing a lot of promise.  It was a smaller group at that time, only around 30 patients. Still, good news.

    I'm sure oncologsts know a lot more about how well it works now than they knew then.  The big clinical question remains whether it is best to go ahead and follow with the SCT.

    Where do you farm ?  My grandfather had a large wheat farm in central Kansas.  He also raised a lot of a feed grain known as milo.   Several of my cousins out there run a large Black Angus "genetic material" operation in the same county today (they sell bull seman, for you city folks).  But they also sell a large quantity of adult bulls and cows.  Very complex, requires extensive genetics understanding.  They know the ancestry of their cows better than the royal families of Europe knew their own.

    max

  • illead
    illead Member Posts: 880 Member
    Encouraging.

     

    Hi Todd,

    I am really glad to hear  that they are not necessarily considering a stem cell transplant because I know that there is a lot of thinking that it may not be necessary.  Not that they won’t decide on it but it is very good news that they had success with just  DHAP alone.  I really don’t know what to tell you about side effects of DHAP but maybe someone on the forum has experience and can let you know. Since Bill had very little side effects, I really don’t have the experience with it,  but I think usually no matter what the side effects, they usually aren’t nonstop the whole time you are having chemo except for maybe neuropathy or a change in your taste. I think side effects such as sickness, weakness etc. only last for a few days after your infusion, but I could be wrong and maybe someone can correct me.  At any rate you are a very healthy go getter, which will be very much in your favor. Bill is also and the drugs that he is on now do affect him more  than his initial chemo ever did but it still doesn’t stop him, he will be 70 in November and our 46-year-old son still won’t arm wrestle him. It sounds like Dr. Maddocks and her team are really on this and as I said you are in good hands. Also, if you are going to a cancer center for your treatment you will find very caring and knowledgeable nurses who will treat you like someone very special.  I think you will be able to get all the things done that you are worrying about, it may take a little longer than normal but you’ll probably have enough drive to get it done. Write when you can but we know how busy you are right now and we understand.

     Hang in there, 

    Becky

     PS   I am dying to know about that squirrel o your head

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,737 Member
    illead said:

    Encouraging.

     

    Hi Todd,

    I am really glad to hear  that they are not necessarily considering a stem cell transplant because I know that there is a lot of thinking that it may not be necessary.  Not that they won’t decide on it but it is very good news that they had success with just  DHAP alone.  I really don’t know what to tell you about side effects of DHAP but maybe someone on the forum has experience and can let you know. Since Bill had very little side effects, I really don’t have the experience with it,  but I think usually no matter what the side effects, they usually aren’t nonstop the whole time you are having chemo except for maybe neuropathy or a change in your taste. I think side effects such as sickness, weakness etc. only last for a few days after your infusion, but I could be wrong and maybe someone can correct me.  At any rate you are a very healthy go getter, which will be very much in your favor. Bill is also and the drugs that he is on now do affect him more  than his initial chemo ever did but it still doesn’t stop him, he will be 70 in November and our 46-year-old son still won’t arm wrestle him. It sounds like Dr. Maddocks and her team are really on this and as I said you are in good hands. Also, if you are going to a cancer center for your treatment you will find very caring and knowledgeable nurses who will treat you like someone very special.  I think you will be able to get all the things done that you are worrying about, it may take a little longer than normal but you’ll probably have enough drive to get it done. Write when you can but we know how busy you are right now and we understand.

     Hang in there, 

    Becky

     PS   I am dying to know about that squirrel o your head

    Rocky and Bullwinkel

    Is that a squirrel ?  We have millions of gray squirrels here in SC.

    I think it is a small pet monkey. Only Todd has the answer.....

     

     

  • gottarace
    gottarace Member Posts: 17
    edited August 2018 #21
    Spider Monkeys from Monkey Land in Punta Cana

    That is a pic from our Family vacation to Punta Cana... Monkey Island.. Was a fantastic adventure....

    I owe my life to the maids in Punta Cana..... If they hadn't been running behind and had left two wash cloths instead of one that day I probably would not have found the knot on my leg.... Who knows if or when I would had found the knot if it wasn't for that day...

    Todays update: Echo is done and port is in.....  Tomorrow morning is LABS of some sort and Bone Marrow biopsy.....  Not sure what happens on this either???

    I am on 2 Facebook MCL pages and have seen some good things...  

    Heard President Trump was stopping by the James on Friday... That will make it rough on the wife coming up to see me after she gets off...

    PET scan???? how long does it take? Getting it on Thursday at 7 am... Then treatment starts at noon... going to be a long few days since I have never been in a Hospital overnight...

    Thank again!!!!

    Todd