CSN Login
Members Online: 8

You are here

Newly “Cancer Free”

Billbikes's picture
Billbikes
Posts: 6
Joined: Nov 2018

 For about the last year and a half(16 months) I have been fighting a pretty nasty case of NHL.

Wednesday before Thanksgiving I got a call from my Dr telling me the latest scan was clear. I’ve been dealing with this for what seems to me to be an eternity I really don’t know what to expect going forward. 

po18guy
Posts: 934
Joined: Nov 2011

Well, congrats on being in remission! Life has forever changed and you are in the process of finding the new normal. I caution cancer patients not to ponder their old life or desire to have it back. Why? First, because that is not possible and second, what did that "old life" have in its future? That's right: cancer! Who wants to go there?

Rather, do what you can to recover, such as tidying up your diet and slowly working your way up the fitness ladder. Will you reach your prior level of fitness? Maybe, maybe not. But, you are alive! Always remember that you must be alive to have complaints.

If you bike, good! That is excellent exercise, the cardio-vascular workout that you need. I was riding 8-12 miles nightly when I was pretty much filled with cancer. I have no idfea how I did it, but I was motivated and enjoyed the rides.

You will experience what is termed "noise" in that each ache and pain, or each bought with fatigue will cause you to wonder if it is a relapse. That is normal, if not exactly comfortable. Report anyt suspicious symptoms to doctor, as you want advance warning so as to take quick actioon of a relapse ever occurs.

Which variety of lymphoma did you have? There are 50+ different sub-types.

It is all doable, one day at a time. Be thankful for waking up and that will help set the tone for the remainder of the day. For perspective, I have been in treatment for 10 years and just began my 20th drug. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3088
Joined: May 2012

Congrats, Bill

Similiar to you, I did not begin posting or even reading here or at any support site until after treatment, actually about two years after my last infusion.

I would ditto all that Po wrote. A regular here a few years ago coined a very insightful term, "Scanexity."  It refers to the anxiety that someone in remission has when going for scheduled follow-up scans.  From what I have read here over the years, scanexity is pretty severe for most the first year or two, and then gradually diminishes over time.  It never completely leaves most writers.

I would add that the average lymphoma patient who enters total remission never relapses. By "average" I mean over 50%. So, unless you have one of the extremely relapse-prone strains, you more than likely won't relapse.  In an ironic way, most aggressive strains (if total remission is achieved) relapse less than indolent (non-aggressive) ones.  In fact, the higly indolent stains like follicular are clinically defined as "incurable."   I had (Have ?) an extremely rare HL (NLPHL).  NLPHL is itself extremely indolent (even more so than follicular) and it is also the most frequently relapsed form of HL.  But even it has lifetime relapse probability of 15%. That is, 85% of the most likey to relapse individuals never do.     

Just a little statistical background, and a cause for remaing positive.  

Congrats, again,

max

 

po18guy
Posts: 934
Joined: Nov 2011

...of a clean scan. Why focus on the negative, when one can choose to remain positive? It is an act of the human will. I have survived what is basically a nightmare lymphoma journey. If I can do that, you can easily do it.

Billbikes's picture
Billbikes
Posts: 6
Joined: Nov 2018

I’ll try and add some more information and answer some of your questions. 

Origonally the diagnosis was pretty difficult to pin down. They really weren’t sure what it was until they drained some fluid(5 litres)from my abdomen. Even after that biopsy they thought it was a leukemia (ALL Acute Lymphoblastic Leukemia). My Oncologist says it really doesn’t fall completely in any category, although it may in a decade or so, lol. They started treating it as a leukemia at first with success, but I went into Salvage, and started on a Chemo more suited to lymphoma...RICE. That worked very well, until it didn’t, lol. It seems it adapted to whatever they threw at it. at this point we were at 10 rounds of chemo. 

next up was a month of 24/7 immunotherapy, Blinotumomab. They were optimistic, but once again, the nasty bugger adapted and success was minimal. Finally they decided to try Radiation. 5 weeks of daily radiation. The last treatment was in September, and the last PET showed clear. 

Billbikes's picture
Billbikes
Posts: 6
Joined: Nov 2018

It’s been a rough haul. I’m still not convinced it’s over, I had come to the conclusion I was going to be in treatment for the rest of my life, but hopefully a long life. I definitely have a different outlook than I did before. 

Early on the first chemo put me into Tumor Lycis and an immediate trip to ICU and Mutli System Organ Failure. I was put in a coma for a few days, even to the point my GF was told to get my friends and family there sooner because there wouldn’t be a later. Somehow I pulled out of that, only to have many trips to dialysis since my kidneys weren’t working. 

From around Aug 7- the middle of Sept 2017 I have no memory of, just some very vivid dreams. 

So every day above ground is a blessing. And I already know the feeling of Scanxiety, lol. Although I’m sure it’ll be different in the future “waiting” for the next sho to drop. 

Yes I am a cyclist, and I WAS a runner as well, although now my legs won’t move fast enough so I walk briskly. I still am able to ride, but not up hills, YET. I am also a motorcyclist, and an off-road Jeeper. I know the prospect of the last two kept me going in my darkest times. 

po18guy
Posts: 934
Joined: Nov 2011

Indeed, that is a rough journey! Yet, you beat the odds, the predictions, even the prognisis - if there even was one. I also wonder if you were ever referred to e hematologist? Oncologists are often in the dark regarding leukemias and lymphomas. Even hematologists are in the dark about some of the extremely rare varieities. Were you trated at a National Cancer Institute designated comprehensive cancer center? If so, good!

If not, I would have your biopsy samples re-evaluated at such a facility to make certain that the beast was properly identified in the first place. You may never relapse, but the type that you battled needs pre-planning just in case of a relapse. As you well know, in the case of some blood cancers, correct identification can be extremely difficult. That which cannot be identified cannot be properly treated. 

Billbikes's picture
Billbikes
Posts: 6
Joined: Nov 2018

I was transferred very early on to the Hospital at the University of Pennsylvania. From all indications it seems I was lucky I got in so easily, or maybe it is an indication of how sick I actually was. I do know that there are patients from all over trying to get treated at Penn but there just aren’t enough beds. im not sure of the specialties of the oncologists I had while I was an inpatient but once I became an outpatient I was transferred to my current oncologist who is a hematologist who specializes in leukemias. Even after it was determined to be a lymphoma she still remained my “main”, the treatment was directed by a lymphoma specialist who I think I only actually met once. 

Dr Noelle Frey, my “main”, it seems is a pretty big deal from what I’ve heard from the other oncologists I’ve seen from my different hospital stays. Not to mention probably the best “bedside manner” of any dr I’ve encountered, not to mention she’s cute as a button, lol. It seems my specific case has been the topic of many conversations in different circles. 

po18guy
Posts: 934
Joined: Nov 2011

I am biased, but I would head straight for a specialist who knows and treats (and has a track record with) your exact lymphoma. Since traditional treatments for many rare lymphomas have a rathert dismal record, the latest research results can save lives. Such research saved mine, several times now. My hematologist is a brilliant doctor and researcher. He does not absolutely need to consult with others, but does. This is always a good sign. He is a member of an international T-Cell consortium which routinely shares research results and case studies.

Subscribe to Comments for "Newly “Cancer Free”"