Newly diagnosed Splenic Marginal Zone Lymphoma

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

Max Former Hodgkins Stage 3 said:

Karmic Wheel

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

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!

KarenSMZL said:

I am not in watch and wait,

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. 

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