Canceled Maintenance Chemo, and Questions

That brings us to today, February 17, 2014.  Had an appointment for a visit with Dr. Danko and my routine maintenance chemotherapy today.  It has been and felt like so long since I've been treated that when they called my name I forgot about the fact that I always do labs (blood draws) first, then I go sit back down in the waiting room, then they call me back for the visit with Dr. Danko's nurse, then Dr. Danko.  Weird that I forgot that...

Dr. Danko indicates that all labs appear normal.  I have no symptoms or complaints other than my continued hormonal issues.  To his knowledge/experience this issue has not been connected to a side effect from Rituximab (my maintenance chemo), but he is curious enough that he wants to try to find out.  

He indicated that Rituximab takes about 3 months to leave your system.  Rituximab was part of my major chemo treatment (R-CHOP), and it has been my maintenance drug.  So, the longest I have been without this drug in the past year+ is about 2 months.  Dr. Danko canceled today's treatment and wants to see if when Rituximab clears my system, my hormonal issues go away.  This brought us a bit of anxiety - forgoing treatment, but Dr. Danko explained current research, etc. that indicates there is nothing "magic" about the every other month treatment regimen I have been on.  He feels confident that this approach will not jeopardize my short or long-term health.

If these three months of not having Rituximab causes the hormonal issues to go away, Dr. Danko will consider pausing the maintenance chemo and having a PET/CT scan and bone marrow biopsy (re-staging) in April.  If the scan and biopsy are clean, Dr. Danko may consider discontinuing maintenance chemotherapy completely.  Dr. Danko also mentioned a one-time radioactive treatment for Follicular lymphoma maintenance.  We didn’t really discuss what would happen if this does not help with the hormonal issue, but we assume it means maintenance chemo will continue as originally planned…not sure.

As time has gone on, recently questions have formed in my head about my cancer.  I have listened to some webinars and gone on some online forums, etc.   It is interesting to both Mindy and I that I am just now having/forming these questions.  I think, for whatever reason, I must feel “ready” to wonder and ask these things at this time.

I asked the following questions of Dr. Danko today:                
Q: My diagnosis is/was DLBCL and Follicular lymphoma.  Correct?
A: Correct.

Q: Which occurred first (DLBCL or Follicular), and which “transformed” into which? Is there ANY indication of why transformation happened, or what contributed to that happening?
A: Due to the positive reaction of my cancer to the treatment, Dr. Danko suggests that at this point they occurred at the same time (and didn’t transform as we were told on 1/25/13).  (Transformed Lymphoma is an aggressive and difficult to treat cancer…we suppose what he is thinking is that if I truly had transformed, I would not have responded this positively to treatment…)  

Q: My understanding is that DLBCL was aggressive and highly treatable.  My understanding is that I no longer have DLBCL.  Is that correct?  
A: Correct.  There is most often a likelihood that DLBCL recurs within one year….April/May will be one year for me.

Q: What is the likelihood of DLBCL returning?
A: Dr. Danko went over the Prognostic Index results again.  Based on that the likelihood is that I have an 80% chance of being clean of cancer 5 years from the ending of treatment (April/May 2013).

Q: My understanding is that my maintenance chemotherapy (Rituximab) is to treat my Follicular lymphoma (and that generally Follicular lymphoma responds well to treatment).  Correct?  
A: Yes.

Q: The implication of this is that I still have Follicular lymphoma.  Correct?  If this is true, how are my PET scans coming up as "clean as a whistle" (if I have cancer, how do I have clean scans?)?
A: Scans only show cancer the size of a pea or greater.  I could have cancer cells present that never show on a scan unless/until they begin to grow. 

I read a great article today from the American Cancer Society entitled, Living With Uncertainty: The Fear of Cancer Recurrence.  It states, “A recurrent cancer starts with cancer cells that the first treatment didn’t fully remove or destroy. This does not mean that you got the wrong treatment. It does not mean that you did anything wrong after treatment, either. It means that a small number of cancer cells survived the treatment you had. There were probably too few to be detected on tests or scans. But over time, these cells grew into tumors or the same type of cancer as the first one.”

Q: My understanding is that Follicular lymphoma is not curable.  The implication is that I will have cancer for the rest of my life.  Is that correct?  So, in 5 years I will not be considered, “cured” (I will never be considered, “cured”).  Correct? 
A: If the Follicular lymphoma is not doing anything (growing, causing symptoms, etc.), we don’t worry about it.  Dr. Danko said that “cured” is never a word he likes to use.  Even if I had just been diagnosed with DLBCL, he says he never gives a definite promise that the cancer will never come back, even if scans have been clean for five years.  This was interesting to me…I suppose I have been looking for a point at which I would be, “in the clear,” though I know there is always a chance of recurrence.  

Again, the ACS booklet helpfully indicates, "Most doctors avoid using the term 'cure' because it implies that the cancer is gone forever. As we have discussed, this is almost impossible to say in any case of cancer. The best a doctor can do is say that they can find no signs of cancer in your body at this time. This is most often stated as 'No
evidence of disease.'

(So, when I say that scans are clean, that only means that there is no evidence of any cancer....)

“Your doctor may continue to watch you closely for many years and do tests to watch for any signs of cancer recurrence. There’s no harm in assuring yourself that you are cancer-free if that’s what all the evidence shows. Enjoy the feeling that you do not have cancer. But it’s still possible for cancer to come back even after you have been cancer-free for 5 years or more."

Q: My goal is to stay in remission for the rest of my life.  Based on your experience in working with those with Follicular lymphoma, how likely is that to happen (stay in remission for the rest of my life). 
A: Dr. Danko does have 3 or 4 patients that have Follicular lymphoma and have been in remission for 6 to 7 years.

Despite all of these medical facts (whether they are interpreted positively or negatively), my faith is still in my Heavenly Father and His plan for me and for my family.  I continue to submit 100% to His will, with full confidence and assurance that He knows what kind of life is best for me and my family.  I have no doubt in that.  Do I want to feel better?  Yes.  Do I want to be fully “normal” again?  Yes.  But I have an understanding that come what may, I need to love life.  I have the faith to be healed, and I also have the faith to not be healed.