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Introduction and Hello

KimDee's picture
KimDee
Posts: 7
Joined: Feb 2017

Hello everyone,

I'm very new here and look forward to getting to know you all and learning as much as I can about how to be a person with cancer.  I have NHL, from what I'm told, Large Diffuse B cell type.  Last week I did my first round of chemotherapy in the hospital.  I'm getting DA EPOCH R and I tolerated it fairly well - the prednisone though!  ugh.   I'm 45, and up until about 3 weeks ago, I was insisting I was too healthy to be unwell.

It started in early November with a persistent cough and hip pain.  Who would've thought they'd be related?  and my Fitbit showed my heartrate went from being in 70's for my desk job, to being 100-115 just sitting at my desk!  The fist week in January I got into an MRI machine to look for a disc issue as my hip pain had gotten pretty bad.  They confirmed a herniated disc, but also saw liver lesions.  A week later, a CT scan showed 3 large masses on my liver, and a mystery spot on in my pelvis marrow.  Yay me.  So, the doctors prepared me for a cancer diagnosis, and it took about 12 days later for the NHL diagnosis. I had had a liver biopsy, but it was marred by steriods I had taken two days before.  So after the 2nd liver biopsy, they were able to tell me, very agressive large diffused NHL, and of the 3 chromosomes they look at? I have two that have mutated.

I'm now resting at home, waiting and watching for my numbers to go down. I have good days and bad days for my energy.  I'm anemic. My hair will fall out probably this weekend.  First sign of thinning, I'm preemptively having my head cropped close.  It would be disturbing to me to have clumps of hair falling out. 

I don't know how to be a person with cancer.  I'm not well enough for normal activities, I was between jobs, so I'm definitely in a holding pattern until this summer.  What do I do with myself?  I putter around, rest, read, knit, watch Netflix, very small errands.... and I stare at the wall. Wondering why did this happen to me? I accept it, but I still have a sense of disbelief - this is really my life now.

Kim

leck4
Posts: 1
Joined: Feb 2017

Hi Kim,

My husband was just diagnosed with a very aggressive NHL as well.  He is 41.  Was having some strange symptoms and finally went in for an endoscopy and colonoscopy. He just found out two weeks ago after a very large mass was discovered in his stomach.  I found your post as I was looking around for info.  He has gotten three opinions for treatment, and for some reason, not the one you are having, though I have seen this one on other boards and seems more common.  He has been told 3 different things:

R-CHOP

R-CHOP with methotrexolate

Hyper-CVAD- which requires 4 days in-patient every 3 weeks for 6 times

He has a pretty demanding job that in a way is a blessing for a diversion but on the other hand I know he will feel pressure when he can't perform normally.  And I don't want him to feel stress. 

 

Sorry I can't help but just wanted to say hello.

Shannon

po18guy
Posts: 1041
Joined: Nov 2011

The methotrexate (MTX) suggestion makes me think that they suspect central nervous system involvement. If so, then the MTX is warranted. It is highly tolerable and is used chronically by many people with autoimmune diseases. It is a drug that is known to cross the blood-brain barrier and for that reason it is considered in cases where spinal or cerebral involvement is known or suspected. I received it "just in case." Has one of those opinions been from a large reseach center or university hospital? I would tend to lean in that direction, as they are cutting edge and possess the latest research results. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3362
Joined: May 2012

I also wish to say hello to you Kim.

Your NHL strain is among the most common and most aggressive, but ordinarily curable. And, counterintuitively, more aggressive lymphopmas, if they can be put into complete remission (CR), relapse LESS commonly than indolent disease does.  The challange, of course, is to reach CR. Indolent lymphoma is clinically regarded as "incurable," but can be put in full remission for years or even decades. And even relapsed indolent disease is usually returnable to complete remission.

R-EPOCH is R-CHOP  with Etoposide (Toposar) added.  "DA" of course means "Dose Adjusted": the doc follows your blood counts and adjusts accordingly. It allows higher dosing for more effictiveness (when blood counts and symptoms allow).  Your doctor is hitting the disease full-blast. My neighbor did R-EPOCH 7 years ago, and later on had to be infused as an inpatient, but I do not think that is common.

You have the smarts and attitude to beat this quickly and permanently,

max

po18guy
Posts: 1041
Joined: Nov 2011

I had the blessing of being prepared for cancer, due to extensive history on my dad's side. So, when it arrived, my thought was, "Well, what do we do about it?" Such an illness is always game changer and a life changer. Yet, you remain exactly who you always were, and having a good attitude will help you. As to what remains for you to go through, you will be utterly amazed at the strength you have. And, when strength is waning, simply ask for more and it will be given you. We need not know at the time where it comes from, but it does arrive when we plead for it. But, if all-day naps occur, let them!

Hydration is key, as you go along. Your kidneys need to excrete all of the toxins as well as the dead cancer cells, so they have a lot of work to do. Water is their fuel to do this job. So, you'll get all the exercise you need, and probably more, just running to and from the bathroom. Let family and friends know that there will be times when you want a little "self-time" so that they might ask before dropping by. When fatigue is troublesome, it can become difficult enough to think, let alone talk. 

As to eating, well, eat what you can and what will stay down. It does not have to be the most nourishing or the healthiest food - just enough caloric and protein intake to maintain your body and help it deal with everything that is happening. You can get through this. You can do it. And with the love of family and friends, you will come to realize just how valuable you are to them. The silver lining in the clouds, so to speak. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3362
Joined: May 2012

Kim (and Shannon also),

Po introduced another element to the living-with-cancer world: a person's world view -- spirit, toughness, faith, philosophy.  

Without wanting to embarrass him, read Po's  'About Me' section regarding his treatment history: 18 differing chemo drugs, I forget how many relapses and trials.Too much to fathom. I'm sure he loses count at times, has to think awhile to recall everything.

 

I myself was run over by a car years ago, followed by years of rehab. Then advanced lymphoma, then prostate cancer.  At any given moment I cannot list or recall all of the the diseases I have or have had.  Any individual can get through anything.  Cancer eventually loses its mystique, and becomes just a thing, a weird uncle in the back room. I view it only as an inconvenience now.

And compared to what untold numbers here  have gone through, my little speck of sickness is as nothing. And we must recall also those who, finally, lost the fight. There have been a fair number here, some of the dearest people I've ever been privileged to know.

You will be well soon. It readies us to fight again at a later date we do not know.

 max

po18guy
Posts: 1041
Joined: Nov 2011

Max, we do not know what we can tolerate until we must undergo it. Looking at my medical records is a daunting task. Had someone thumped that seven pound stack of paperwork down in front of me eight years ago, I probably would not have consented to treatment. But, day by day, we can and do live our lives out. Best not to think too far ahead - as we have been well advised. Today has enough evil of its own, and tommorrow will take care of itself.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3362
Joined: May 2012
  1. I know the truth of which you write, Po.  No survivor desired the hero's fight -- it is thrust upon them. I watched the Navy SEAL Afghanistan movie Lone Survivor again recently. I recommend it to all; I had occasion to meet SEALS during my submarine years.

I mentioned the fallen above, and just felt compelled to mention dixiegirl, who wrote here for 8 years, until her passing 5-14-2013.   Always cheerful....So many relapses.

We miss you Beth, who wanted more than anything to never be a hero.

I was listening to this old CD last night (ABBA), and the lyrics, which I had never paid much attention to in the past, really hit me. I thought they were so fitting for Beth and others.

Press "See More" and a pull-down will show all of the lyrics, which include,

I have a dream, a song to sing, to help me cope with anything

If you see the wonder of a fairy tale

You can take the future, even if you fail

https://www.youtube.com/watch?v=HuB7cJR3ZiI

.

ShadyGuy's picture
ShadyGuy
Posts: 454
Joined: Jan 2017

morning is a long way off, but its coming. You are very curable. Not so me. Next song for you will be Alive Again by Chicago.

https://m.youtube.com/watch?v=Ps0g-yptsa0

Sal0101's picture
Sal0101
Posts: 126
Joined: Sep 2015

I was diagnosed with DLBCL in September, 2015 and had 6 sessions of R-Chop and 3 sessions of IV methotrexate.   I was told that because of where my tumor was first found, the left breast and numerous lesions on a diagonal down to and all over my liver, that the breast had something to do with the reasoning behind the methotrexate.  Evidentially if males present with it in their testes methotrexate is also recommended.  My CNS was clear and they wanted to keep it that way.  There was controversy at first between my team up until the day I was to receive my first treatment.  I actually ended up waiting at home the first time because my oncologist was waiting for a phone call from a member of the panel that came up with the standards of care.  The final decision was in my hands, I went for it and Am glad I did. CNS remained clear. Even though I relapsed CNS was always clear. 

How do you cope with this diagnosis and treatment?  I had no idea how I would do it! I had no choice! I went with the flow and refused to let it sideline me! I'm sure I put on a brave face many times when I really didn't want to, but that's just me.  I worked, but my employer allowed me to work from home. There were days it was hard because of the fatique.  I retired after my SCT, although my employer has made it very clear that I'm welcome back anytime.  ( just an FYI, anyone having a SCT automatically qualifies for SS disability)

i think now, after my SCT and an all clear diagnosis, I'm afraid to let my guard down. That part is Almost harder than going through the chemo! 

You can do it!  We'll be here! 

Sharon

 

 

illead's picture
illead
Posts: 852
Joined: Aug 2012

Well, you just heard from some of the best.  My husband is the one with lymphoma, I am the caregiver, and thankfully he is in remission.  Reading this thread has helped me so much when I didn't even know I needed it.  I think you can see that we are a caring and supportive group.  As was mentioned, you will get better, even though at the moment it may not seem so.  Lymphoma almost always is put into remission quickly with chemo, so in a short time you will probably be reacting to the chemo rather than the lymphoma.  As was also said, you will be able to put this on the back burner and get back to your life.  We will be here for you whenever you need us.

Thank you Max and Po......a gift.

My best,

Becky 

KimDee's picture
KimDee
Posts: 7
Joined: Feb 2017

This is a wonderful group and Max and Po responded wonderfully.  "Get back to your life"... I look forward to that day... I'll get there, and might whimper and whine here and there until I do.  But this group will remind me that yes, it will happen. Just believe and fight the fight. I can do both in spades. :)

GSP2's picture
GSP2
Posts: 103
Joined: Feb 2015

getting well. Your physical and emotional needs. Make them known, but in your own way.

Your family, your friends - they will step up for you. But they may not know what you need

at any particular time. Listen to your body. Check in here. you have bright, caring knowledgable

folks in this group who have been through more than they thought they could handle. There are

survivors out there who have made the adjustment to being a survivor. Their stories are all over

these pages.

 

Steve.

KimDee's picture
KimDee
Posts: 7
Joined: Feb 2017

Somewhere early on in my diagnosis, I saw the advice - this is your cancer - this is your story, it goes down as YOU DECIDE.  And while I'm not being Princess Kim, I did cut out a toxic friend with finality, and I've given myself permission as long last to simply say, I don't care about that... and I just let it be.  I don't have to worry about every little thing any more!  I have cancer to deal with, and that is where my focus will be.  My husband is the greatest, and I can whine about anything, and he'll do what he can, even if its just listening.

lindary's picture
lindary
Posts: 679
Joined: Mar 2015

Throughout my treatment I kept thinking of a commercial that was running on tv. It showed several people and each one would say "I am not cancer I am (their name)". I will admit that there were days all I could think of was the cancer that I had and how my life had changed as a result. Then there were days I didn't think about the cancer at all.

What I tried to focus on was family and work. None of our kids live at home but I probably heard from at least one of them every day, usually text messages. My daughter-in-law messaged every other day. I spent down time playing games online, participating in online discussions and reading. My treatments were on a Tues so the weekend just before the next treatment was when they would visit. The grandkids (3 of them) were just told I was sick and could not do stuff like I usual do. Sometimes they would bring pictures they drew for me. We would spend maybe 10 - 15 mins talking about my treatments and then the rest of the visit was about them. 

I would say I got my life back last June. It left me with low blood counts, lack of energy, no hair and achy. All I could do was to stay moving, eating the best I could and stay postive. Around July I started getting weekly massages to lossen up the muscles. I found a little place near me that didn't charge a fortune but all of the workers are great. It helped immensely. That along with working on walking 20 - 30 mins everyday made me feel like I was doing something to get my body back. Of course every 8 weeks when I have the Rituxan maintenance they do the CBC. It was depressing to see the red & white counts only creeping up maybe .2 or .3 in 8 weeks. I will say that the last treatment at the beginning of the year are almost at the low end of the good range but  I am trying to not get my hopes up too high for what they will be at the end of the month. 

I've had 2 birthdays since I was diaganosed so I am not sure how much to blame the cancer for the aches and tired feeling versus just getting older. On the other hand, many co-workers still believe I am less than 60 years old so I guess I am doing good. I will be 67 in a few months and hope to be able to keep working for a few more years. I will say that this last week at work was one of the best I have had since I started this journey. For the first time in over a year I was dealing with multiple problems at work and was able to keep track of each one without digging through my notes. Another step forward. 

And that is all we can do, one step at a time. 

KimDee's picture
KimDee
Posts: 7
Joined: Feb 2017

Thank you for sharing so much.  Your story gives me hope about myself and I admire your journey (if that sounds right?!). I've had so many friends step up wanting to help, and a wonderful neighborhood that has come together to cook for us, I realize just how wonderful support is!  I was always well before, never needed any help from anyone. Always happy to help others.  And now its my turn to receive. I tell my neighbors they are literally part of my healing as they're feeding us so well. I am a lucky lady.

 

paella's picture
paella
Posts: 81
Joined: Jun 2012

 

Hello and welcome to the best little forum this side of anywhere. 

 

Take heart!  As hard as it is to believe - your diagnosis of DLBCL, particularly the more aggressive or high grade type is often curable.  Are you getting the R EPOCH over a 5 or 6 day in-patient 24/7 infusion?  And are you being treated at an NCI designated/certified cancer center?   

 

Cancer sucks.  Period.  But everyone on this forum will tell you that attitude is SUPER important. I know it sounds crazy but facing it with gusto and an Amazonian-like determination to beat it DOES help.  Believe in your own natural good health and your strong immune system.  Really believe. Your normal activity level has been walloped but try to get as much exercise as you can.  Use your fitbit to set a realistic level of steps and move move move!  Get used to peeing like a banshee because drinking lots of liquids is also vital. 

 

I can’t tell you how much the very people who have responded to your posting have helped me.  But each of these people are your people and they mean it when they say they’re here for you. 

 

 Paella

 

KimDee's picture
KimDee
Posts: 7
Joined: Feb 2017

Thank you Paella,

I'm a positive person, and I fully beleive that my lymphoma is curable.  Your "cancer sucks" paragraph describes me!  I'm taking this all with a strong positive attitude, I believe in my strength, good health, and my husband already brags about my immune system. I'm strong and I'm a fighter. I actually took off my fitbit the other day "because it wasn't telling me what I wanted to see" - but I did a beginners yoga workout today.  My doctor has advised me to do more on good days, and every little bit will help. I'm going to be as ready for round 2 of chemo that I can be, and to be honest, I wasn't too rough during the first round.

Hodgkinninja
Posts: 14
Joined: Jan 2017

Hello I wish you the best of luck God bless you remember not to let the cancer define who you are.

PeprmntPat55's picture
PeprmntPat55
Posts: 60
Joined: Aug 2016

Hi KimDee!    

As I was told, nobody wants to join this forum. I am very thankful, however, for the folks on here who give out heavy doses of encouragement and are full of knowledge and experience. I think you would be hard-pressed to find a forum as informative and resourceful as this one. 

I can reallly relate to your comment that you don't know how to be a person with cancer. Who does?  I struggled with my identity as much, if not more, than anything.  I didn't want to be known as Cancer Girl. (or Cancer Woman)   I did not want cancer to define me, to limit me.  I actually had  to practice saying "I have cancer" so I could get used to hearing it!  

I was diagnosed with Follicular Lymphoma, Grade 1 Stage 3B in August 2016.  After 6 cycles, 12 treatmentsof Rituxan and Bendamustine I am in remission.  Rituxan maintenance will commence in April.  

Through cancer, I found love.  Let me tell you this story that I've not shared with anyone.  Last July I was cleaning out my car in preparation for a blind date. I fell into the car, landed on an armrest and broke my left rib.  Dr. ordered a chest X-ray to rule out a ruptured spleen.  My spleen was fine but a tennis ball sized Mediastinal mass was discovered. A month later I had my diagnosis.  The man that I met on the blind date?  I gave him several chances to walk. He stayed by my side, and even took me to several treatments!  He took me out when I was up to it. We went out to eat. We went dancing. Dancing!! We even went mountain climbing once!  He made me feel beautiful and healthy.   Be you, Kim. Don't be the cancer that invaded your body but just be your beautiful self. Love yourself through this journey and never never never ever give up hope!  

Blessings to you and I look forward to hearing from you!  

PP55

 

 

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