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Newly diagnosed Splenic Marginal Zone Lymphoma

KarenSMZL
Posts: 16
Joined: May 2016

An indolent Non-Hodgkin's lymphoma really kind of stinks.  Tell friends and family that it is slow growing and invariably they will say, "Oh, that's good!"  No it's not, you can't cure slow growing.  I have tried so hard to be positive, my doctor even said, "If you have to have cancer, this one isn't a bad one to have."  I don't feel lucky and it seems that every day I have more and more difficulty keeping myself positive.  I have so much to be thankful for, a great supportive family, good insurance, a good doctor and treatment center close by.  Except for the cancer, I am in good health.  So why do I get so down?  I just noticed today that I have livedo reticularis and I told myself, well, you're lucky it isn't on your face.  But it gets so tiring trying to find things to be thankful for and to feel blessed for when you know you have a disease that most likely is incurable. I will spend the rest of my life either in treatment, or in remission worring about relapsing. How do I do this?  I am struggling here so any advice is appreciated.  

caretothepeople's picture
caretothepeople
Posts: 18
Joined: May 2016

Dealing with the emotions of cancer can be like roller coaster and it's so, so important to tend to your emotional wellbeing. Joining a support group if you aren't in on already could be a place to start. Working with a therapist (many specialize in working with cancer survivors or those with chronic illness) could help too. Having a support network around you can help so much and make it easier to get through the ups and downs!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3517
Joined: May 2012

Karen,

Who do you know who is not dying ? 

I had a highly advanced, extremely indolent form of HL ("NLPHL") diagnosed six years ago. My oncologist treated it "toward curative effect," and we got there.  There has been no sign of recurrence in about six years now.  If it crops back up, getting it back into remission is reportedly not difficult.  Most indolent lymphomas are regarded in practice as curable, in the sense of "complete remission" (CR) or "no evidence of disease" (NED).   Mine has a lifetime liklihood of relapse following CR of 10% to 15%.  That means 85% to 90% of patients in remission never see the disease again, which is "cured" in my book.  So I am not going to worry about some definitional regard of the disease as "incurable."

Two years ago I was diagnosed with Stage II prostate cancer (PCa).  PCa is virtually always very indolent, over 95% of all cases.  The average age at diagnosis is 68, and most guys even with no treatment could live ten years with it before it causes death, so there is a saying that "you die with it, not from it." That is, a man in the US 78 years of age is statistically due for death anyway.  In most other (non-Western) nations, a 78 year old man should have already been dead.   It is so indolent, with PCa, "Active Survellience" is one of the more popular "treatments," in which a urologist simply monitors the disease. But with treatments, most die of very old age without the disease at all.  I was 58 at diagnosis for the PCa (I was 53 when I discoved the late-stage HL), and because of my relative youth (with PCa if you are 58, they regard you as a kid) I had surgical removal. It is gone forever, 95% liklihood. 

Bring on the next problem, life !   You know my address well, given how often you come around !  Becasue I had read a lot about PCa, and dealt with advance lymphoma earlier, when the urologist broke the cancerous prostate biopsy results to me, I yawned in her face (unintentionally) and went home.  A few months later, aftet the surgery,  that episode of my life was over forever, very likely.

Next month, I have the fnal CT of a spot on my lung, which is most likely non-cancerous. The same month I have my six-year annual lymphoma checkup.  I pray they both be negative, but if not, I'll deal with it, but I will not be saddened. I will fight another day.

I was crushed essentially to death when a car rolled over me 25 years ago, after I was ejected out of the dirver's window.  Six months later I could get out of bed and stand up.  Skeletally warped for life, trauma induced scoliosis for life, kyphotic deformity between the shoulders, broken back at T9, two inoperable, totally collapsed discs.  Hip socket put together with surgical wire, postesis from hip to knee.  Thirteen rib fractures, flail chest, pneumothorax (sixteen days on a vent), both scapulas broken.  My ortho surgeon had been a Marine trauma surgeon in Vietnam. I jokingly said to him one day, "I know you've seen way worse than me."  He stopped and starred in my face, and even watered up a little, and replied, "I've seen more fractures than you had....But not in anyone who lived."  The man had been aa Marine Corps trauma surgeon in Nam !

The first time after discharge from the hospital that I went back for followup x-rays in the outpatient facility, when the tech first saw my films, he showed them to the other techs, and they all came out in the waiting room, to "look at me."  One told me, "Everyone is betting it had to be a mothorcycle."   I told them, "You lose. Car." 

Two years later I could walk again with a quad cane.  Six years ago, six months of R-ABVD, two years ago my prostate was cut out, with the issues that causes for life .  I have severe neuropathy for life from the Vinblastine (keyboarding a long letter like this is very frustrating and difficult for me), memory loss, fibrosis in both lungs. Mild continuous tremor (a Parkinson's-like disorder), various sleep disorders (RBD and apnia) and about a dozen other things which I honestly cannot remember to list right now.  I have it all on paper somewhere.

I regard myself as the luckiest person I know, and give thanks for every day, which I hope I can continue to do till I'm 90.

With your disease, whether it is called curable or not, the statistics have you most likely living till your 80 or older, so you have cause for thanksgiving as well.  It is normal and understandible that you find this ordeal depressing and terrible, and worring about the future is what we do.  But to a very large extent, it is what every human being does. 

I wish you treatment success and happiness. There is no reason you can't have both.

 

max

Mary from NJ's picture
Mary from NJ
Posts: 60
Joined: Apr 2016

Max - What an inspiration you are to all of us on the discussion boards!  You are not only filled with such helpful knowledge but also share your knowledge in such an encouraging way!  Thank you!

hopeful lady
Posts: 36
Joined: Apr 2016

Hello,

 

You just wrote down what most of us have thought at one time or another.  This is all new to me as well and I find the only reassurance that I can have is the kind I give myself.... I am alive today and the sun is shining.  That is all I really need!  This journey is hard and you do feel alone sometimes. I think all of that is natural and normal.  It takes a little time to adjust.  I do think that the people on this site are so helpful and have so much experience.  Listen to them and then find your own pathway.  Some days are better than others. 

All of the newest and latest research seems so beneficial in giving us all hopes of a longer, better future.  Statistics are just that!  I was stuck on them in the beginning as well.  I tried hard to find out what they mean.  I do not care what they mean today.  I have no other choice but to stand and fight this disease and hope that in some way my battle will help others as well as me.  We are all here for you so cry, scream, rant (whatever you need) we are here to uplift and encourage.  We all have different battles but are hoping for the best outcomes ever! 

 

The best to you in your journey and stay on this site!  You will learn a lot of useful information and it helps to knock the fear down a little. 

 

Dianne

KarenSMZL
Posts: 16
Joined: May 2016

Thank you for your kind and encouraging words Diane.  I think one of the things that has been hard for me is that I have been a nurse for 20 years and have been very involved in researching evidence based practice and so am very familiar with research studies, their results and what that means to me statistically.  But you are 100% absolutely correct when you say that they are only statistics, they are not necessarily you or I. 

hopeful lady
Posts: 36
Joined: Apr 2016

It was hard for me for a while to even consider myself "human" when I felt like a number or a compilation of numbers with this disease.  So much blood work and so much invasion of my body which I felt was not "me" anymore.  At first, I was afraid to do my normal everyday chores for fear of moving the wrong way or causing the disease to spread by eating the wrong foods, etc., etc., etc.  There are days when I research things and days when I put it all down and just breathe!

I know how hard it is since we can not be told the outcome of our treatments....it was hard for me to realize that anything can happen with treatment or without treatment, so I decided to be kind to myself and learn about my disease and the treatments available, but not stress over the stats!  I think my first post ever on this site showed my fear in the short amount of time my doctor told me my treatment would work.  I was so down, but the dear people on this site reassured me that these stats are outdated and they steered me to other places that led me to finding the International Foundation for my specific disease (Waldenstrom's Macroglobuliminia) and I found lots of stories of long remissions from beautiful people just like the folks here who are cheering each other along. 

Nothing about this is easy...... my daughter is a nurse like you and she really would love to be my doctor!!!  LOL!  She has been a great asset during my treatments and afterwards with her knowledge.  I am sure that your knowledge will help you as well!

 

Thoughts and prayers with you every step of your journey!  Keep posting!

 

Dianne

Anonymous user (not verified)

This is very simple advice I was given once. It sounds simplistic and anecdotal but maybe its simplicity is what I like about it. And really what choice do we have? Simply "Stay calm and return fire." Don't freak out. Just do the best you can fighting this dragon and enjoy your life while fighting back. Its best not to fixate on it. Just stay in touch and go about your life. Life is Good! I know - it's easier said than done.

KarenSMZL
Posts: 16
Joined: May 2016

You are so right, life is wonderful.  I very much appreciate your advice and I think I will try to, "stay calm and return fire."  Great way to treat this dragon.  We all have good days and bad days, and I was having a come apart day.  Thank you for making it a little bit better.

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

Dec 2014 I was told I had follicular non-hodgkins lymphoma, usually indolent. I wasn't so lucky. I had an enlarged node in the abdomen plus the CT scan found fliud in the plueral sack around my right lung. So the oncologists decided to treat it as an aggressive form. Between reading various cancer sites and talking to my Drs I got the message, we have no idea how long this may have been in your system un-detected. So I did 6 cycles of R-Chop (each cycle 3 weeks) starting in Jan 2015 and then CT scan & bone marrow biopsy. There were still signs of the cancer so in Aug I started 3 cycles of RICE which required 3 1/2 days in the hospital. Next round of tests showed it was in remission and the Drs wanted to do SCT. But then there were a number of oddities that showed up over the next few months. Mainly blood counts suddenly dropping and then very slowly coming backing up. So there was another round of tests and the disease is still in remission. The Dr.s have decided that it is best to go into wtach & wait for now. 

Karen, I can understand your worry about being told you have cancer followed by "we aren't going to do anything". Indolent doesn't just mean slow growing. It can also indicate the it may not grow at all for months or years. Here is a link that could help:  http://www.lymphomation.org/watchfulwaiting.htm

There is another group called Lymphoma Research Foundation. I was at a conference of their's not that long ago and one of the things they said is that with many of the blood cancers the length of remission has gotten so long that they need to reconsider if the patient should still be considered in remission or cured. So there are positive things to think of. 

Right now I have a few positive things for you while you are on Watch & Wait: your life will not be ruled by medical appointments & tests, you don't have to research side effects of drugs you can't spell or pronounce, you don't have to wonder when you are going to get your energy back or when food will taste normal again. 

Good luck Karen. May you do Watch & Wait for many years to come. 

 

KarenSMZL
Posts: 16
Joined: May 2016

I am not in watch and wait, but I thank you for sharing your story and for your wishes for me.  I admire your courage and fortitude going through the rigorous chemo treatments that you have.  I am so happy that you are in remission and I pray that it lasts a liftetime for you.  I understand watch and wait and I wish it would have been appropriate for me.  I have massive splenomegaly and am currently on Bendeka and Retuxan. I have known about this diagnosis for a month and 4 days and have had 2 surgeries and started chemo in that time, not to mention that I have continued working full time.  This has been a month in which I have had a new granddaughter born that I hope with all my heart will remember her nana as a gray haired old lady. I was having a bad day and feel somewhat shamed by some of the responses I was given.  I know others have it worse than I, so chin up and carry on.  Again, thank you for your support and encouragement. 

hopeful lady
Posts: 36
Joined: Apr 2016

You feel anything you want to feel and share with us!  We all come from different pathways to this disease, but we all are fighting the same monster!  I know  how you feel about your granddauther.... what a wonderful experience!  I just recently watched my grandson graduate from four years of college... have another one graduating four years of college in December, a 16 year old granddaughter who just got her license, and a three year old grandson who is the joy of our lives.... some days I get on my pity pot and think if this goes south fast, will he ever remember the times we shared?  It is a "grandma" thought and I totally understand.  I now stop myself when that happens and I look for the good things and tell myself that all we have is today for any and all of us (even those not fighting cancer).  Enjoy the moments!  And if you feel down and out, we are all here for you! 

 

The best to you through your treatment! 

Dianne

KarenSMZL
Posts: 16
Joined: May 2016

I don't think the emotions that I have been feeling have been about a fear of dying.  It has been a grieving process for my life before, because my life will never be the same again.  It may be better with chronic cancer, I don't know I guess I will wait and see.  All I know is that prior to 6 weeks ago I had never had surgery, didn't take any medications, didn't have a porta cath, didn't have mottled skin, felt energetic and young, didn't have pain in my abodomen, could sleep at night, could concentrate at work and now all of this has changed, and yet I am still the person I was 6 weeks ago trying to accomodate all this and continue functioning as a wife, mother, grandmother, and an assistant administrator at a hospital.  It is hard.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3517
Joined: May 2012

Karen,

For many, for me, the toughest period was the first few day and weeks after diagnosis, especially since at the time I knew essentially nothing about lymphoma.  When I went in to get my first-ever CT results, my old doc was out of town, and a very young woman MD, just out of med school, was filling in for him. As she started going over the results with me, SHE started crying, and I tried to reassure her.  It is still an emotional time to me this day, that encounter.  

My first-ever trip to an oncologist was a few weeks later. We went to the appointment at the cancer center at our teaching hospital. It was early, hardly light when we got there. I was afraid going in, afraid I would see "messed up" people, although the waiting room was empty.  The first other arrivals then came in: a couple with their son, maybe 12 years of age. We started talking.  His head had a scar like a tree that had been ringed. He had had a brain tumor, and the surgeons cut the top of his skull off to get at it.  It had mostly healed.  Then, an older man with most of his neck cut away, speaking into one of those electronic voice makers that they use, by blowing from their trach hole.  My fears weere not unfounded.  Months later, at the infusion center (a large place, with about 40 stations) I got used to everything; people badly disfigured; tubing hanging everywhere, this and that.  But eventually it became as nothing.  I have since spenta lot of time at hospices, vising old friends who were at the end, or seeing them on the cancer ward about to pass.  It does not affect me now, you just have to love them .

I often face particular trials with music.  I shared this song at this board some time ago, but it fits for people who must climb mountains. We are all Renegades here, people with trials.

https://www.youtube.com/watch?v=1u-niluB8HI&feature=youtu.be

.

 

KarenSMZL
Posts: 16
Joined: May 2016

Hi Max, thanks for sharing your memories of what is was like at the beginning for you.  I have had to comfort a few people after telling them, but fortuneately not my doctor.  I am fortunate enough to be friends with my primary care doc and radiologist so they have been very supportive.  I have worked with both of them for years.  I think when I am looking back at this I will get the most emotional about going into surgery believing I would have a splenectomy and waking up with only an excisional biopsy.  I can't tell you how much I wanted this spleen out!  I believed, probably incorrectly, that if they took my spleen out I would have 8 years or so before I would have to have anymore treatment.  I am a nurse and have had the honor of caring for many patients and families as they transitioned from this life to the next.  One of the most difficult but most rewarding experiences in my life was to care for my mother through the last stages of her illness.  I do need to try to refocus from the negatives and simply appreciate the blessing of each day, for none of us are guarenteed a tomorrow.  The video you shared is very inspiring and I think will start trying to live more like a renegade. 

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