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Just diagnosed with Mantle Cell

illead's picture
illead
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Joined: Aug 2012

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   

gottarace's picture
gottarace
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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's picture
illead
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Joined: Aug 2012

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's picture
gottarace
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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's picture
illead
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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's picture
gottarace
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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's picture
illead
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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's picture
gottarace
Posts: 17
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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's picture
illead
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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's picture
gottarace
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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's picture
illead
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Joined: Aug 2012

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's picture
gottarace
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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's picture
illead
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I will be thinking of you, try to have a good week with as little stress as possible Undecided

Becky

gottarace's picture
gottarace
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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's picture
Max Former Hodg...
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Joined: May 2012

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's picture
illead
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 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's picture
gottarace
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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's picture
Max Former Hodg...
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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's picture
illead
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Joined: Aug 2012

 

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's picture
Max Former Hodg...
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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's picture
gottarace
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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

illead's picture
illead
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I couldn't figure out how you had a tamed squirriel, the monkey makes so much more sense Laughing.  I didn't realize you were at the James and had to be hospitalized, I thought maybe they would have you get treated locally.  Those big centers are incredible aren't they, they keep you running but so efficient.  Hope all went well today and your biopsy went well, they can hurt sometimes, but the one Bill had at MD Anderson was a breeze so I am hoping the same for you.  The pet will probably take about 2 hours or so, you have to sleep or rest for awhile after they put the tracer in which is about an hour, then another 30-45 mins for the test.  Will you get released on Friday?  Yes, that should be interesting manuevering around the Secret Service etc. Undecided  I know this is hard for you, but it will be over in no time.  I am on an MCL forum called ACOR, and they talk about the facebook pages, I am glad you found it.  If you are interested in ACOR, I can help you find it, it is a little difficult but very informative, I just monitor it, haven't talked much on it. We just got home a little while ago, Bill had his monthly maintenance rituxan infusion today which takes awhile.

Hope you are able to sleep well tonight,

Becky

gottarace's picture
gottarace
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Hi Becky,

My treatment is a multi day event. I dont have a hard schedule but some on Thursday then some on Friday and maybe Sat. but Dr Maddocks said thurs usually go home on Sat.

HOPE HOPE HOPE....

Found out the port cant be used until next round. what will be ok they said.  The local center has only seen 2 cases in so many years. They said they weren't set up to do what I needed here. but testing, trabsfusions ect why are set. So Dr Rose and Dr Maddocks are working together..

I have an appointment with Samantha Jaglowski on the 19 to discuss stems in the futrre if needed.

Trying to figure out what to take to the hospital since i have never stayed before. trying to get stuff for amy set up and so forth.

Thank you so muck Becky......

Todd

illead's picture
illead
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that I am thinking about you and know you will do fine.

Becky

gottarace's picture
gottarace
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All packed up I guess????

It all starts in the morning....

Thanks all!!!!

Todd

illead's picture
illead
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I am hoping you can do that................a little bit.  You will be treated so well and they will take all the guesswork out of everything.  Try not to worry.  I think about your wife, I know it must be difficult for her not to be there during the actual treatment and going by herself afterwards.

Both of you please take care,

Becky 

gottarace's picture
gottarace
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Day 1 Chemo is in the books!!!!! The big worry was rituximab (retuxin)... almost everybody has one or more of the reactions. I had none!!!!!! so they turned it up and let it fly. on my 24 hours of Cisplatin right now. will come of at 303am. then have 2 rounds of Cytrabine 12 hours apart. KNOCKING ON WOOD... Doing the Numbers i'll be on the way home tomorrow at 4 to 5 pm. My nurses and Dr Staff are getting all the stuff ready to ship me home....I guess the clean living, working, and eating good foods has paid off... I have no symptoms at all.... NONE!!!!! Now in the week to come????? The whole staff is elated.... I KNOW I AM!!!!!!

Thank you all for the help and input...

Todd

illead's picture
illead
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Good for you Todd, I hope it continues.  You will be soooooo happy to get home!  Bill had reactions to rituxan the first time he had it in '11 and then again last year when he started it again after being off for 4 yrs.  He had severe rigors both times, it kept the nurses and his doctor hopping, they still talk about it.  I hope this has settled your mind a little.  It is quite a regime you are on, my goodness, no wonder you have to be in the hospital.  Have a great rest of your weekend.

Becky 

gottarace's picture
gottarace
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Yes it is fabtstic to be home.  I know I am worn out... The last night in the James I may have gotten 1 hour of sleep due to contact and beep beep beep..

I feel a lot better but??????? DELIMA... I feel fine and can do things without and issues cook, walk outside, do things around the house, but then I can also set down relax and nap a bit. I have never been a napper... Should I just relax for a few days? Dr said if I feel like starting up workout go ahead..

Thank you Becky....

Todd

 

ShadyGuy's picture
ShadyGuy
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To be uncertain. This is a new experience. Do what ever you feel you want to do and are able to do. Have fun. Eat anything you want. This chemo is cumulative and will likely be more taxing as the process continues. You seem to be doing great so far. I wish you well. Just remember its ok to have fears and doubts. Its natural and normal.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
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Todd,

I'm glad you're so well for now.  Shady gives the best response:  You must live today as you feel today. But know that tomorrow may be radically different. It is normal to feel pretty ok after the first few treatments of a multidrug reminen.  It is also normal for that to fall apart and soon become a fond memory a month later.  As I have written elsewhere more than once, I expected to be worthless the day after my first infusion.  But instead, while I felt "weird," I was able to function. In fact, after three total infusions, I went back to work, as if nothing had happened. Then, within a few more weeks, I collapsed. Soon I was sleeping 17 hours a day and could not walk out to my car to go to infusion; my wife had to assist me. I write of what I know.

Feeling well today, don't read too much in to that.  I am not a killjoy or nay-sayer.  Some patients have an easier time of this than others.  It is just that, in most cases, that will not last. Hard days are ahead.  Not every incidental feeling that you have is a cosmic sign that all is well or not well.  It is literally one day at a time.  Pace yourself and hope for the best is the best that you can do.

max

illead's picture
illead
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I am so happy for you and your family.  You have gone through the worst, mainly because you were facing a total unknown and one that most people fear in the back of their minds.  Now, although you have more trearments, you can start getting on with your life.  Please believe that you will no doubt go right into remission.  I can almost guarantee that.  Yes, for sure if you feel like napping, you need to.  Your body has gone through a lot and still is, so you need to sit, relax and nap whenever it wants you to.  It is killing cancer cells and recouping the good ones that die in the battle.  I know you are not used to it but it is only temporary usually and being quite healthy and young to begin with is in your favor to bounce back completely.  Just give yourself time.  I don't have a clue about any side effects to your chemo or how long they last.  From what I read on the internet, it doesn't sound too bad but all chemos are different and how people react is not textbook either, but the good news is, so far so good, and that is in your favor also.   So 1 down 3 to go, it will go fast.  Your next treatment will be close to Bill's infusion, also 21 days apart, Sept 18.  You and Amy deserve a little get away if you can eke one out. 

You made my day,

Becky

po18guy
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Gotta speak up here. Please don't freak out about staging, as staging mostly directs therapy. Lymphoma, being a so-called liquid cancer, flows in the blood and lymph - exactly where the treatment goes. Any tumors it forms are fed by your blood. It cannot hide. Lymphoma cells are susceptible to treatment when they are dividing. Even though "aggressive" sounds ominous, that means that a high percentage of the cells are dividing at a given time. Thus, when the cheno hits, it desteoys a large percentage of them.

Stage IV? Not to worry, as many if not most lymphomas are found at late stage. I have been stage IV at least twice, and that is with two different aggressive T-Cell Lymphomas in which one's life span is a few nomths if it does not respond. I have had about 100 tumors total, as well as spleen, Ileum and bone marrow involvement. All gone - at a price I will readily agree - but they are gone.

Now, as to your work record... fugedaboudit! Your life is more important than any job. I was forced into retirement at 58, losing all insurance and 40% of my income. It turned out to be the greatest favor they ever did for me - and it was unintentiional. If you must retire early, that can be a blessing in disguise. You have to make that leap of faith, know that things will work out, and be ready to find that there is life after work.

ShadyGuy's picture
ShadyGuy
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In lymphoma, stage III/IV disease is one of five International Prognostic Indicators used to predict overall survival - how long a typical patient is expected to live. Being stage III/IV is common at diagnosis, but is not insignificant. It definitely has an effect on overall survival but less so on progression free survival. In other words this can be interpreted as meaning a stage IV patient can respond well and go into remission (better life quality) but that patients prognosis is for a shorter life expectancy than say a Stage I/II patient. BUT each case is a bit different as are treatment regimens. Not worth worrying about! Same with Rituxan. It definitely improves progression free survival (quality of life) tremendously, but has not been proven to improve overall survival (total length of life). Thats how I interpret things So its just an opinion.

ShadyGuy's picture
ShadyGuy
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My IPI score was 4 out of five on the IPI.  Actuarily, I was given a 22% chance of living 5 years. That was 7 years ago and I feel better now than I did then. Take all that stuff with a grain of salt. As a general trend it is ok, but each individual can can vary tremendously from the prediction. Some will die sooner, some will live longer and some will live significantly longer. My neighbors father was diagnosed at age 53 and is now over 80. These are actuarial guidelines, not hard and fast rules.

gottarace's picture
gottarace
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My marrow results are back in but wont see the Dr until I go back for round 2 on the 13th. Somedays I get up and feel great then I hit the wall. Tired and just don't feel like doing anything but resting. Food just doesn't sound good and fluids are tasting off... Thank the lord i stocked up on coconut water before my treatment.... I eat smaller portions several times a day... will turning up the spice amount help????

I know I just feel OFF.... Not myself... I am sure this is all part of the changes going on.  I am lots to look forward too..... so I will overcome this....... I know I have a long road ahead...

Todd

gottarace's picture
gottarace
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i was taken back to the James last fever of 101.2 neutropenic fever.

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