Just diagnosed with Mantle Cell

illead

gottarace said:

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

Silly me

I couldn't figure out how you had a tamed squirriel, the monkey makes so much more sense .  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.   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

illead said:

Silly me

I couldn't figure out how you had a tamed squirriel, the monkey makes so much more sense .  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.   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

Multi day

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

Just know

that I am thinking about you and know you will do fine.

Becky

gottarace

Packed

All packed up I guess????

It all starts in the morning....

Thanks all!!!!

Todd

illead

Only good thoughts

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

Day 1 chemo

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

Great news

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

HOME

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

 

illead

Your body is talking

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

"Liquid cancers" and staging

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

gottarace said:

HOME

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

 

Its OK

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

ShadyGuy said:

Its OK

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.

Attitude

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

ShadyGuy

IPI Risk factors

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

An example

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

Thank you all..

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

Update

i was taken back to the James last fever of 101.2 neutropenic fever.

GmaVee

I know this is a very old thread but where are you, Todd? I'd like to know how you are doing four years later.