So much to say, so little time to write. As a caregiver I am constantly bombarded with so much “to do.” I laugh at times because I thought I used to be a busy mom co-raising three young kids. Now, all I know is that I take it one day at a time and each day comes and goes. Some days are filled with lots of laughter and joy while other days end with me hiding in a closet crying because it is just all too much. Thankfully, the latter days are few and far between. Today, I am thankful. Today, I am cautiously optimistic. Today, I am ready to tackle the world and keep on keeping on with Ryan’s current protocols all the while the kiddos enjoy the summer break having extra opportunities of mommy and daddy time. During this unusually quiet afternoon I get to share updates of our journey.

First, I would like to remind our readers that when we first met with the oncologist on May 10th, he was very clear that immunotherapy could take up to 3 months, and certainly at least 6-8 weeks to get some real results. He called immunotherapy the “old lady’s drug.” I believe he was honest and also the very reason he wanted to start chemotherapy at the same time so that Ryan would see results much faster. (let’s keep this statement in mind as we work thru Ryan’s progress)

Fast forward to one month later . . .

On Tuesday, June 7th, we met with the oncologist for the usual monthly follow up appointment. It went rather well and he acknowledged that Ryan had made some good improvements as his body was showing signs of a partial response to the immunotherapy drug since there were nodes on the neck and groin area that we could no longer visibly see. The ascites and pleural effusion issues still persisted. He was cautious about the potential response and reminded us that the immunotherapy drug could take up to 3 months for full effect and the average response rate is 60 days. He also believed that as the tumor bulk decreased in the belly we should see Ryan’s fluid issues resolve. In the end a PET/CT Scan would be ordered to truly see what was going on inside Ryan’s body.

On Friday, June 10th the PET/CT Scan was completed.

We then met with the oncologist on Tuesday, June 14th. It was an interesting meeting in which we did not say much. We just wanted to listen to what the doc had to say. He came in and immediately seemed quite perplexed because earlier that morning Ryan had over 4 liters of fluid drained from his belly and radiology had stated that Ryan needed another thoracentesis for his left lung. The doc went on to say the report showed a lot improvement from the previous scans. He reviewed labs/scans/reports and I could tell he was perplexed because the fluid is currently worse than previous weeks. The reason he was puzzled is because every time we have talked to the local doctors at the hospital and our oncologist it was always “the cancer is causing the fluid” and the answer was always, “when the cancer regresses the fluid will cease.” It was apparent to Ryan and I that he expected the fluid to resolve itself by now based on the current scan. The scans showed the heavy tumor bulk had regressed much. In fact, during the appointment he asked us if we had met with Ryan’s surgeon and of course we had not. The oncologist will be sending the scans and report to the surgeon for a second opinion on the fluid issues. (I believe I have figured out the fluid issues, but I rather not chase that rabbit on this blogpost.) One more thing I would like to point out is the varied opinions from oncologist to oncologist and our own oncologist’s words that seem to change from appointment to appointment. When we met with him in May, he was very specific to say that Rituxan was the “old lady’s drug” and that it would take longer for Ryan to see much response. That is one of the reasons he reiterated chemotherapy. During this appointment he said he was not surprised at all with the vast improvements the PET Scan showed. I was honestly a bit confused. I know he has a lot of patients and we only see him once a month for less than 30 minutes so I am not saying he lied to us, please don’t take it that way. I’m just saying that unless someone is on a similar journey, they have no clue what it is like to meet doctors, get varied opinions and sometimes no answers; or later realizing that the doctors themselves do not have the answers that people assume they would. (they are also human after all!)

I know at times I have been very critical of the standard oncology treatments because of their blanket approach. I still am critical and one day I can share many reasons why, but at the same time I truly am thankful for oncology and for the options it offers. I am very thankful that the oncologist was willing to start Ryan on immunotherapy only. He did acknowledge at the last appointment that by only doing immunotherapy Ryan was able to smoothly pass the tumor lysing period that would have been of concern with a chemo + immunotherapy approach (due to high tumor bulk). On the doctor notes, he literally wrote in “increased tumor lysing syndrome concern.” This basically means that Ryan’s kidneys did not face failure due to toxic overload, his electrolytes stayed balance, the risk of infection was lessened, etc. He also reiterated to both of us that Follicular lymphoma is incurable. While the scans were great and we all hope for NED/full remission at the next set of scans in 90 days, the doctor stated at some point it would come back and when it does we would need to reconsider chemotherapy. We heard him out and let him know we are looking at all options (ok, so we are not open to chemo at this time, but we just don’t want to debate it). We all mutually respectfully agreed to stay on the current track and reconvene in a few weeks. It was a great appointment. I am truly thankful for that. I am thankful that the doctor was pleased and we could continue moving forward with the current plan.

 

Now to the reason that everyone wanted me to write this blogpost. We are almost to the results. First, I want to make a statement.

***While I do believe immunotherapy has been a big part of Ryan’s improvement, I do NOT believe and refuse to give all the credit to Rituxan. When Ryan started on Rituxan he had already been on several treatments since mid to late April. His labs had improved dramatically and the lymph nodes of the neck were already decreasing. I personally believe that it was everything TOGETHER that allowed for Ryan’s body to make some major headway on apoptosis (cancer cell death). I also believe that it was my ability to stay ahead of issues by ensuring Ryan was taking certain herbs/supplements and doing major detoxifying. For example, after the first week of Rituxan Ryan’s white blood cell count dropped several points. He started on blood, spleen and bone marrow herbs and his blood cell count recovered back to perfectly normal in a week. Everything we are continuing to learn from the “natural” side has aided in Ryan’s dramatic improvements. For more of what we are currently doing, please view my previous post (the Path to Healing).***

Here are the results (condensed from the report):
Brain: clear, just like before
Neck & Clavicle area: There is no more than mild uptake worrisome of malignancy in lymph nodes around the clavicles. This represents complete resolution in the neck area and near-complete resolution in the clavicle. The SUV peaked at 2.5 on one node that is now smaller than the previous scans. The largest nodes previously measured up to 4.3cm, now biggest is 1.3cm. The nodes previously peaked at SUV levels of 5.4 (SUVs of  less than 2.5 usually means no malignancy).
Chest: SUV levels peaked at 3.2 down from 6.2. All nodes are smaller or back to normal size. Resolution of most of the chest area and near-resolution of the right and left axillary.
Abdomen and Pelvis: There is no abnormal tracer in the liver, adrenals or spleen to suggest presence of malignancy. This represents resolution since the last scan as the spleen showed SUV uptake of 4.9 and it is now at 1.6. The spleen is currently 14cm where it previously was enlarged up to 20cm at different times (normal is 10-11cm). There is no mention of the liver being enlarged (it had been enlarged up to 24cm previously, normal is under 16cm).
A large bulky mass of adenopathy was previously present in the mid abdomen where SUVs peaked at 5.8 and measured 10.5cm x 12.2cm x 14.8cm along with other clusters of adenopathy. In this last scan, the mass had reduced to 7.6cm x 9.8cm x 6.3cm and SUV peaked at 3.3.
Enlarged nodes in the groin area previously peaked at SUV levels of 4.3 and now peak at 2.7. The volume of matted nodes currently measured 3.0 x 3.9cm where it used to measure 3.8 x 4.3cm.
Radiologist noted that the ascites and pleural effusion on the left lung did not have SUV uptake to indicated malignancy.
(Side note: Adenopathy, also referred to as lymphadenopathy, is the enlargement of lymph nodes anywhere in your body.)

In other words: there are still some swollen lymph nodes throughout Ryan’s body, especially the abdomen. There is marked reduction on all lymph nodes and others are completely normal. There are still some swollen lymph nodes that do not show malignancy and over time the body will absorb those tumor toxins. The spleen is no longer malignant. The fluid does not show malignancy, however, it is always better to test the fluid for malignancy in a laboratory.

In the radiologist’s words: Complete Resolution in some areas and Near-Complete Resolution in other areas!

Here’s an image from the scan. The top pair is October 2015 and the bottom pair is June 2016.

PET scans detect metabolic activity. Parts of the body that require a lot of energy will therefore show up on the image. There are places that SHOULD show up, like the brain, heart, bladder, etc. These places are all very active and need energy. What the radiologist will look for is “abnormal” accumulation in places where it does not belong.

What does these scan results that mean to us?
Simple, we must keep on keeping on! We will continue to adhere to the current protocols and will do everything we can to help the liver so that the fluid issues will resolve. We will continue to explore all additional treatments, especially on the “natural and alternative” side. What I know is that we are on the right path and Ryan is on his way to wellville!

 

Some final thoughts . . .

I know that some people believe that the chemo + immunotherapy could have been an easy path as well, but I’ll just put it this way: Ryan and I have always looked at this journey long term. We are not just looking at today, but looking at Ryan being a healthy, vibrant husband and father for decades to come. When you have this approach it makes decision making differently. Trust me when I say my research has not stopped and I will continue to always look for ways to keep our whole family healthy. Going the immunotherapy route was not throwing the white flag on “alternative,” but rather realizing that Ryan’s body was just too advanced from the beginning. We were far behind the starting line when we finally realized cancer had overtaken much of his body. We have made some great decisions and at times made some not-so-great decisions. For example, Ryan did something right in January because he arrived at CHIPSA with a bleak prognosis and left CHIPSA in a much better state with no fluid issues. (We have been exploring everything we did back then to see how it can help Ryan now.) When Ryan did start immunotherapy he was strong and ready with much blood marker improvements. This journey is not easy and requires a lot of soul searching and decision making. There is no manual on life and there is absolutely no way to learn it all and figure out what is best without trial and error.

We are continuing to figure out what will be best for Ryan long term. One of the ways we are doing so is the Greece Test. Last week we sent off a vial of Ryan’s blood to Greece. The Greece Test was originally developed by two allopathic doctors in Greece trying to figure out if they could pinpoint which chemotherapy treatments would work best on cancer patients. This would potentially take the guessing game out of the equation. Ten years have passed since this test was originally created and it is now done in 7 laboratories worldwide. The Greece Test now tests around 60-70 chemotherapy drugs, 15 immunotherapy drugs, dives into tumor related genes/expressions, and it even tests 40-50 NATURAL “ALTERNATIVE” agents. Hospitals around the world use this test and even big name hospitals such as MD Anderson and Sloane Kettering are now creating their own laboratories to administer similar tests. (for more info click here and here.) We hope that this test will provide a road map to what can actually help Ryan fight this disease instead of the ongoing guessing game. We know that there have been treatments that worked and we should have never stopped them, we just don’t know exactly which ones. It will be interesting to see which ones show up as positive agents on this test. We should be getting the results of the test sometime late next week.

Thank you for following our story . . . all the kind words, encouragement, support and so much more have made such a positive impact on my heart. The negative comments have been drowned out the many positive ones. When I saw the stats today that our blog has been viewed over 4,000 times in the last week it shocked me! Wow!

So much to say, so little time. Maybe at some point I will write a book! Ha!

PS: I know that at some point in April Ryan created a graphic on Facebook stating he was cancer free. Unfortunately, we were misinformed even though several different tests stated he was. We apologize for the confusion and hope our blog posts and other updates on Facebook bring clarity to this.

Live loved,
Live free . . . Because YOLO!
~Caroline Luelf